Friday, December 25, 2009


Serendipity is not only one of my all-time favorite words, but it sometimes seems like a major force in my life. 

Heck, even meeting my husband while at a party 200 miles from my (then) home and while on the Date From Hell (tm) was serendipitous. 

I'm feeling optimistic about 2010 thanks to another bit of serendipity -- that my daughter just happened to end up in a classroom with another little girl whose mom also spent years as a medical mystery before finally finding the right rheumatologist who didn't give up and finally made her diagnosis. (Please don't ask me what it was -- she's told me twice now (verbally) and I never quite get the name of it. Suffice it to say, it's one of the more rare autoimmune diseases. 

Scott met her husband at a couple classroom events that I didn't attend due to flares. They chatted, and someone it came up that both their wives had these weird health problems. 

I met the dad at a Halloween event at the school, but didn't have the nerve to email the mom out of the blue. Although clearly her husband told her about me, because we were both at the class's "Thanksgiving feast" and she pulled me aside to talk about our health problems. 

Of course, she loves her rheumy. I think all of us who go through lengthy periods seeking a (correct) diagnosis will adore the doctor who finally makes it. So she urged me to make an appointment with her doctor. Of course. 

Of course, I've been in a mood (thanks to a combination of back-to-back colds and depression) where it seems pointless to start over with yet another doctor, who will want to run his/her own tests, whether they've been done previously or not, and will ultimately end up in a dead end. 

So when we saw each other at the kids' holiday art show and performance, I had to 'fess up that I hadn't made a phone call yet. Coincidentally, I had an appointment scheduled the following day with the rheumy I've been seeing since January 2008. 

Let's just say it was a frustrating enough experience that it was the kick in the a**, combined with the pep talk from the other mom, to get me to actually make the call. And then I waited. And waited.

Just when I thought I was going to have to take Lisa up on her kind offer to advocate for me with the doctor and his office to get me an appointment, I got a call from his assistant putting the first steps in motion to get me in hopefully early in the new year. 

Isn't it funny how things work out? If Ellie had gotten into the much-coveted private school we applied to last year, she wouldn't have been in Lisa's daughter's class. If we'd put Ellie in the other pre-k teacher's classroom, as we were urged to by the principal, we wouldn't have met this other girl's parents. 

Serendipity is just a beautiful thing, isn't it?

Of course, I'm not really getting my hopes up (too high). Chances are small that this doctor will give me a label and a treatment plan. (Lisa saw a *lot* of doctors before this one diagnosed her, including some of the top rheumatologists on the East Coast, where they used to live. But now she has a diagnosis, and she's on Enbrel -- possibly an off-label use -- which seems to keep her quite functional most of the time.)

But I read somewhere that sometimes getting a diagnosis simply requires getting seen by enough doctors that one finally notices something, or identifies a pattern, or whatever, that triggers a diagnosis. 

So while I'm marking just over 2.5 years of being a medical mystery, maybe this is the connection I needed to make in order to find the doctor who can treat me. 

It's something to hope for, anyway, for the new year. Not quite a resolution, since it's out of my control, but something to aim for. 

Happy holidays everyone, and I wish you all (and myself too :-) a happy and healthy 2010. 

Friday, December 18, 2009

Is Chronic Illness A Kind of Karma?

I'm not sure why, but since I got sick, I keep coming up with theories as to why my health went bad. 

Not, you know, real theories about the source of my illness. But theories as to why I "deserve" to be sick (i.e. I wasn't understanding enough of someone else's invisible chronic illness), or the lessons I'm supposed to learn from being sick. 

My current theory is that maybe I'm supposed to learn patience, and this is all karma because of my general impatience with the world in previous years. Or previous lives.

It seems like I'm always waiting for something specific to happen. I'm waiting for the next visit to one of my specialists. Or I'm waiting for a test result that perhaps will give me a unifying diagnosis. Or I'm waiting for a call from a doctor, or a doctor's office.

At this point, I'm not sure what my hurry is. 

Sure, I called a new rheumy's office to try to schedule an appointment, and the new-patient coordinator hasn't returned my call. Neither has my gastroenterologist's assistant, who I spoke to last Friday and who promised she'd get back to me on Monday. (Btw, the IgG version of my celiac blood work was also normal, but the doc had talked about wanting to do additional testing if it came back negative, so we'll see.) And yes, I've left new messages this week, but no such luck. 

I'm also waiting to hear from the clinic that I was referred to by the Comprehensive Pain Center at OHSU, which has this weird system that won't let me schedule an appointment until they have all the paperwork for a referral despite the fact that my insurance doesn't require a referral. I guess they want to make sure they don't waste their time on patients who don't meet their criteria.

Doesn't it just seem like there has to be some mystical force at work here? 

And it's not just my health situation that's got me thinking someone wants me to learn a little patience.

I've dropped the ball on scheduling my soon-to-be-5 daughter's birthday party, but part of the problem is I keep leaving messages places that no one returns my call. (Ellie's birthday is Monday, but Saturday at 8 a.m. will be the fifth anniversary of when I went into labor.) We never hold her party until January because of the holiday bustle, but I've usually got it scheduled and planned well before Thanksgiving.

If reincarnation is real, I must have done some awful things in a previous life!

And yeah, I know I'm being silly here chalking it all up to karma or whatever. It's just the way my brain works -- I want to have a reason, a logical explanation, something to point to as the cause. And until my doctors figure out an explanation or three for my health problems, I guess I'll just have to make some up for myself.   

Saturday, December 12, 2009

More Humor For The Undiagnosed

This piece was posted on MedHelp by Quixotic1, a retired pediatrician (who retired because of her multiple sclerosis) after someone shared the earlier piece about D.U.M.B. doctors. :-)

[Btw, I've found the multiple sclerosis community on MedHelp to be very friendly, welcoming to newcomers, and, especially thanks to Quix, very informative and helpful in interpreting test results and translating medicalese. I haven't had quite as much luck in some of the other forums, but I highly recommend MedHelp as a source of information and support from other patients.]


An article from The Journal of Irreproducible Results from January 2009 had this letter to the editor:
And this from an archived issue of the Journal of Irrelevant Infectious Diseases: Vol XXIV, 34:1098-2012.

"But, new information has come to light supporting an infectious etiology for DUMB doctors, specifically Type B - the Factlessness or Factlessitious Subtype - that is not seen in Medicalingerers nor in STUPID doctors.  At a point early in their careers, this subset DUMB doctors can be shown to have been normal, abruptly showing a change in behavior that is characterized by the DUMB syndrome.  This almost always occurs in the setting of a high incidence of DUMB.  This suggests that the DUMB practitioner was suddenly infected by an as yet unknown infectious organism.

The DUMB practitioner is far more likely to refer the unsatisfied patient to another practitioner who suffers from similar "psychologistic" practices.  These infected doctors may run in herds, infecting and reinfecting each other.  They have a herd mentality and are likely to infect whole departments in well-known hospitals.  This may account for the not-infrequent assessments that psychological "stress" is the cause of all problems - all pointing back to excessive preocupation with the idea that symptoms are caused by the act of merely existing.

The acute infection is often hard to recognize, but the astute observer will notice the tendency to stand near the door of the exam room, the revulsion at touching the patient and the discarding of any data that might seem relevant to an otherwise unafflicted doctor, thus resulting in little or no  information being obtained.  The DUMB doctor frequently interrupts the patient.   An early clue is the mounting pile of unread medical journals in the trunk of their cars.  Some have suggested that early intervention might salvage otherwise lost medical brains by merely noting which cars run low in back as they enter the physicians' parking lot.  However, this can lead to false positive results from excessive editions of National Geographic headed for the library for recycling.  

Other tip-offs to the condition are the frequent "eye-rolling" and the tendency to snort derisively.  Some particularly observant sociologist have noticed other  similarities to the bull in a bull-fighting arena include occasional stomping and tossing of the head.  Charging at the Red Flags of depression, female gender, age over 30, "nonspecific" MRI reports, and negative LP results often precede the psychologizing by mere seconds.  The DUMB doctor seems to be surprisingly un-self-aware.

The Medicalingerers, on the other hand, can be shown to have the basic traits of avariciousness so characteristic of this subtype, apparent from very early on in the medical education.

STUPID doctors, however, curiously appear to have some self-knowledge of their malady and tend to refrain from referring to other doctors.  This researcher believes this is in fear that their syndrome will be revealed.  The professional isolation sometimes protects them from infection which might otherwise render them also DUMB.  They find little enjoyment in the day to day banter and sharing of opinions known as "Second Opinions."  They seem to have little care that their mental chaos is an obvious embarrassment to their families and colleagues.

Zermanigoogi, Franco, MD. 


And another piece written by Quix:

One must always wonder at the etiology of such problems.  This researcher, in collaboration with and with funds from the Members of L.I.M.B.O.L.A.N.D. (Living In Madness Because Of Lazy, Arrogant and Narcissistic Doctors) has recently theorized that these are completely distinct and etiologically unrelated problems, though there may be a genetic susceptibility.  One cannot reconcile the frequency with which these are encountered in the same doctor without considering genetics.

A Swedish researcher has possibly found the cause for the otherwise unexplainable association between Continuing Medical Education conventions and TiddleeWinks tournaments.  For decades sociologists have assumed that the TiddleeWinks enthusiasts that have followed medical education meetings was essentially like the followers of The Grateful Dead - a subculture of drugs, arts, heavy rock and tie-dye - which made up an self-sufficient sub-economy which followed the famous band from city to city.

However, an elegant study from Sweden shows that the Tiddly Winks fanatics and a large portion of DUMB and STUPID doctors have the same thing in common.  They share several gene markers on several different chromosomes (2q19, 2p12, 2p23, 21p16)  These genes can be activated by intense mental endeavor - such as may be occur in medical school.  However, it also shows up as an decreased attention span, difficulties with social interaction and a compulsive fascination for brightly-colored objects.  Exposure to brilliant, colored, flying, plastic discs triggers a huge release of endorphins in this subset of the population.  This may well be the basis for the lure of the TiddleeWinks play at the expense of further medical knowledge.  It also expains the difficulty we have found in treating both DUMB and STUPID.  After applying the Freedom of Information Act the Swedish researcher has found a statistically significant relationship between the founders of the Tiddly Winks establishment and medical school dropouts.

Now we can understand the mistaken belief of DUMB doctors that  "There is No Pain in MS".

Friday, December 11, 2009

Happy Chanukah!

Happy Chanukah to those who celebrate it! 

I so meant to use the above photo for our holiday cards this year, but completely forgot about it when I went looking for something appropriate. Ah well, I guess it's a good thing I blog so at least it won't go unused. :-)

My rabbi shared the video (below) of a "flash mob" in Jerusalem singing and dancing a Chanukah song. It's a must-see. (And the song is really catchy, and in English, so make sure you have your speakers turned on!)

Thursday, December 10, 2009


Before I got sick, I was seriously considering becoming a medical transcriptionist with the idea that I could do it from home and set my own hours (i.e. no need for daycare) while bringing in some money. A friend of mine had just finished an online course that I think lasted about a year and was really enjoying herself while doing it. 

It's not one of those jobs you get rich doing, but I'm not sure anything I'm drawn to is likely to make me rich, with the possible exception of Powerball, where I have what? A one in 100 million chance of winning? Yeah, I'm not counting on that for my retirement.

Anyway, I was tickled to get an email this week from someone at saying my blog had been chosen for their list of 100 inspiring blogs for people with chronic illness.

Then when I went and looked at the list, I felt very flattered at being included because so many of the blogs I read and admire were also listed. Anything that puts me in the same category as Laurie Edwards at A Chronic Dose and Jenni Prokopy of ChronicBabe is a huge honor as far as I'm concerned! 

And there are just so many other good ones over there, including many I hadn't yet come across. (I sent a note back including a few recommendations for additions to the list, too.) Go take a look!


Wednesday, December 9, 2009

Humor For The Undiagnosed

Found floating on the Internet in various places, author brilliant but unknown:

Epidemic of Mental Illness in Doctors
The emergence of Medically Unexplained Illnesses has revealed an epidemic of behavioral problems and personality disorders in doctors.

Patients expressing unfamiliar complaints to their physicians often induce the "It's All In Your Head" (AIYH) or the "That's Impossible" response in doctors suffering from these behavioral problems and personality disorders. 

Physicians fixated upon the metaphysical belief system of "If we don't know about it, then it doesn't exist" are suffering from a mental defect or psychological condition known as "Doctors with Unexplained Medical Beliefs": D.U.M.B. 

DUMB doctors are comprised of subgroups characterized by opportunists who are feigning to be DUMB for monetary gain: "Medicalingering" or of those doctors who are not in possession of sufficient information to render an intelligent diagnosis: "Factlessitious Disorder". 

Physicians who are suffering from DUMB disorder place an inordinate emphasis on theories of psychological causality for virtually any unfamiliar complaints that are presented, and manifest a distinctive lack of observational skills when confronted with obvious abnormalities. 

Doctors who exhibit obsessive preoccupation with psychosocial etiologies should be regarded with extreme caution: "Psychosomatization Fixation Disorder" or "Psychologizing" is a distinctive characteristic of mental illness, and should be considered a warning sign that the individual is not rational and may in fact be dangerously DUMB.

DUMB disorder may be concomitant but should not be confused with Signs of Thoroughly Unmistakable Physician Intelligence Deficiency: "S.T.U.P.I.D.", as a STUPID physician is uniformly incompetent, while a DUMB doctor is only mentally paralyzed into "psychologizing" by unfamiliar symptoms and complaints. 

An immediate investigation is warranted to assess the prevalence of DUMB and STUPID doctors, and to determine the detrimental impact that physicians suffering from these mental defects are having on their patients and the health care system.

Tuesday, December 8, 2009

Sign Of The Economic Times

In some ways, I think it's a good year for those of with chronic health problems that limit our ability to get out and about. 

Seems like just about everyone is offering free shipping, which I consider a godsend since it means I don't have to kill myself trying to shop in person nor do I have to pay a premium (i.e. shipping fees) to shop online. 

But I did have to cringe a little bit today when I got a call from Land's End, one of my favorite online retailers, to "thank" me for being a customer and personally offer me a free shipping code.

You know, in case I'd missed all the catalogs they send me, each of which has had a free shipping code. And it wasn't a recording either -- it was a live person on the phone line. Made me wonder how much money they're spending reaching out to customers like that.

Btw, for those who don't know, December 17 is "national free shipping day" and nearly 500 companies have signed up already to participate. Check the official website for codes and links to all the participating companies. Some, like Amazon free shipping if you spend $25, aren't all that unusual. But a lot of companies are participating who don't frequently offer free shipping, so it's a good day to place orders for things you need or want. :-)  

So how did housebound and/or folks with trouble getting around do their shopping before the Internet was around? I mean, sure there were catalogs, but ... I'm very grateful for the web!


Friday, December 4, 2009

There Is Something To This NaBloPoMo Stuff

So although I didn't like feeling obligated to post to my blog every single day during November to participate in NaBloPoMo, it apparently did inspire me in a lot of ways.

While doing these daily posts:

  • I finished "parent questionnaires" from two of the four schools we're applying to for Ellie. (Four pages of writing each.)
  • I also managed to choose and find a somewhat creative way to "sign" photo holiday cards. (Of course, I figured out half a dozen little slogans for the card after it was officially ordered and couldn't be changed.)
  • I designed and wrote a holiday letter using software (Publisher) I'm not familiar with and browsed through the year's collection of Ellie photos (at least 1,000) to choose which ones to include in the letter.
  • I put a lot of work into creating some holiday gifts that I hope will delight Ellie's grandparents and aunts & uncles. (Which I'll tell y'all about after the holidays since some of them read this blog and I don't want to ruin the surprise. But I'm kind of proud of myself for thinking of it and
    managing to get it done, so I'll share it with y'all later. Or you can ask me privately and I'll answer if you're not going to be receiving one. :-)
Whew. Writing that all down, I'm rather proud of myself. I think I'll go pat myself on the back now! :-)

(Of course, there's a much longer list of the things I didn't get done (especially keeping up with email and comments here -- I appreciate every single one of them!!) but should have during November because I used energy on posting that I should have spent elsewhere. But I think it's worth it in many ways if only to show myself that there are still things I can and do manage to accomplish despite this mystery illness.)


Thursday, December 3, 2009

Not What I Was Expecting ...

So remember how early in 2009 I was so happy to get biopsy results from my endoscopy that showed I definitely didn't have celiac disease?

Well, it turns out that thanks to my IgA deficiency, it can't be ruled out. Yet.

I have to admit, I'm starting to wonder who cursed me by wishing me an interesting life!

So, according my gastroenterologist, although in most people evidence of celiac disease starts in the duodenom and then spreads further into the small intestine, for some small minority of people, it can start further down and not be discernible via endoscopy. So the biopsies he did might not be the final answer, he says.

He wants to start again with blood work. When I reminded him my original bloodwork was normal for celiac, he told me it doesn't count now that they have discovered my IgA deficiency because what they search for is IgA antibodies. So he ordered a panel of tests looking at my IgG antibodies (which I'm not deficient in). 

If that's negative, apparently we talk about a procedure to go looking at my small intestine with one of those teensy cameras that you swallow. Here's hoping that if we go to that level, it at least rules out celiac for *sure*!

Wednesday, December 2, 2009

What's That Awful Smell? Ohhhhh ... It's *You*!

People who work in doctor's offices should not wear scents. Period. No matter what type of doctor they work for.

Actually, I'm of the mind that if I can smell your perfume/cologne/whatever without getting intimate with you, you're wearing too much. Whatever happened to subtlety?

I'm seriously thinking about writing a polite letter to my gastroenterologist to let him know how obnoxious the scent one of his medical assistants was wearing. And that was after I was already reeling from the overuse of an orange/citris smelling "air freshener" that was on auto-dispense in the bathroom at his office.

When I complained to the receptionist about it, she agreed it was awful ("I have to think twice about how badly I need to use the bathroom because it stinks so bad in there," she said.) and said they have a repair person coming in to adjust it because it was clearly turned up too high.

And it was. If only I hadn't needed to pee so badly, I would have turned around as soon as I opened the door. By the time I finished -- and trust me, I was as speedy as I could be -- my eyes, nose and throat were all burning. Awful!

And then the MA who brought me back to the exam room? I didn't notice it until she stood holding the exam room door open for me and motioned for me to enter first. Ugh.

At first I thought it was chemical cleaners that had been used in the exam room before I got in there. But when she came over to take my blood pressure, I realized the awful chemical I was smelling was apparently her perfume. Ugh.

I should have mentioned it to the doctor when he came in, but I was a little embarrassed at the thought that she would know it was me who complained about her perfume. And, you know, this is a GI doc's office, not an allergist's or anything.

I kind of wish my asthma had a quicker response time because of course I didn't have the asthma attack triggered by those horrible fragrances until I was home. Certainly the burning in my eyes, nose and throat is pretty quick, but it's not as apparent to people outside my body as when I suddenly need to pull out my albuterol inhaler and take a couple puffs. And I don't even have anything close to the response of people with Multiple Chemical Sensitivity -- imagine how it would have been for one of them!

Anyway, thanks for listening to my rant for the day. :-)

Shhhh! Don't Tell: The December Secret

I think I've discovered the secret to getting into hard-to-get-into doctors without a several months' long wait: Just call for an appointment after Thanksgiving but before New Year's. 

Seriously. It worked for me last year, and I got caught by surprise when I called to make appointments with two doctors and a pain clinic this year. In all three cases, I got an appointment in under a week from my phone call despite those doctors/clinics normally booking out months ahead of time. 

I'm a little in shock by it, in fact. 

For the doctors -- my gastroenterologist and rheumatologist -- I called figuring I needed to do so if I wanted to get in before March. Instead, I see one this week and one next week. 

The rheumatologist's booker actually told me that she could fit me in easier this month than in January. 

I guess a lot of chronically ill people make an effort not to schedule appointments during the holiday season. Clearly it doesn't stop me since I had an endoscopy on New Year's Eve last year! :-) I'm hoping not to repeat that adventure this year though.

I guess it only works with doctors who don't routinely take their vacations around the holidays. I've found that my specialists tend to vacation at other times of year, although my internist, who has young children, does take off during the holidays.

Anyway, I'd be interested in hearing if my theory holds up for other people, or if it's just my collection of specialists that are so available this time of year.