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. 


Jeanne said...


You're right. Serendipity is a great word.

That's awesome that you met your husband only by going through a hellish experience. I totally believe in that whole "sometimes we need to go through to bad stuff to get to the good stuff" notion. What you described with how you met your husband seems to fit that whole category. I know I could give plenty of examples from my life that are similar.

That is really awesome that you met a woman with whom you have things in common and from whom you could get the name of a doctor who might be able to help you get to the bottom of what's happening with you health-wise!

Plus you have children in the same class? What a great opportunity to forge a friendship with someone who "gets it" in a way that only the chronically ill can.

No matter what happens with this new doctor, every stone you turn over helps get you closer to the answers.

One of my chronic illnesses went undiagnosed for 12 years. I had 3 specialists tell me I did NOT have it. (They were all WRONG). The 4th specialist did the EXACT same procedure that I'd already had done and determined that I do have the condition.

While having repetitious tests can be incredibly frustrating and while I do suggest getting hard copies of all test results for your own personal records as you travel the doctor-to-doctor route (which may prevent some repeats), it's important to note that the interpretation of test/procedure results is very important.

So, as infuriating as it may be to have tests repeated, just keep in mind that different doctors interpret results differently than others. Maybe this will help you have the incredible patience needed by chronic illness patients while the doctors run their paces trying to solve the "medical mysteries".

Having been through a number of "medical mystery" situations over the years, I know how incredibly frustrating it can be to play the waiting game while doctors try to solve the puzzles.

I'm happy that you've connected with someone who "gets it". That, in and of itself, is huge. To have your children in the same class is a bonus. To have the possibility of getting answers or relief from her doctor is a bonus.

It sounds to me like simply meeting this woman is a wonderful opportunity to connect with someone with whom you have a fair amount in common.

I've been living with chronic illness since I was 13 years old and I just turned 41. I can honestly tell you that one of the most helpful things for me has been to surround myself (in person, online, in support groups) with people who "get it".

Having support, understanding, and validation from someone who "gets it" is HUGE.

Best of luck at getting to the bottom of your health problems. Hopefully you and this other woman can develop a relationship that provides the mutual support I'm sure you could both use.

Online support is amazing and wonderful. To have a local friend who "gets it", though, is a special opportunity. I'm happy for you.

Have a happy and healthy 2010!!


custom shirts said...

Thanks for sharing your perspectives.Wish to seee more articles from you.