Uncommon Julia

Idiopathic

from the Latin, idios, meaning "fuck if we know"

Those of you out there with a challenging medical history are probably familiar with the term.  In some cases, it can be downright brutal; as in, "We don't know why, this is happening, but we know it's bad nonetheless."

But in other cases, it can be great news; as in, "We don't know what's causing it, but it's not a disease."

Thankfully, Caroline's pediatric orthopedist pronounced her tip-toe walking idiopathic in the latter sense.  He took x-rays and saw not evidence of contractures or any other pathology.  It was music to my ears.  Or chocolate to my mouth. (I've always thought that would be a more apt metaphor for me.)  He cautioned that he couldn't claim she wouldn't need a bit of therapy or corrective measures in the future, but for now, he's not concerned.  He asked that we bring her back if she's not walking independently by 18 months or if she's still on her toes at two years.

I'm very relieved, but there are still big questions lingering about our overall family diagnosis.  That's for another post.  In the meantime, check out my idiopathic daughter's infinite cuteness:

You Say "Heisenberg Uncertainty Principle"...

I say "Observer Effect".  Let's call the whole thing off!

I read Stephen Hawking's A Brief History of Time in high school.  For fun. (Don't look at me like that!)  Actually, I read it twice.  Because I needed to in order to grasp one tenth of the content.  Reading each sentence was like trying to untangle poorly stored Christmas tree lights.  But I loved it nonetheless.

I scarcely remember a thing from it, apart from the fact that it would be a very unfortunate thing indeed to be an astronaut caught in a black hole, but it still felt good to stretch my brain that way.  The only other concept I remembered was the Heisenberg Uncertainty Principle.  Or perhaps it was the Observer Effect, because according to Wikipedia, I do indeed think I've conflated the two.  Regardless, here's my understanding:

The harder you try to measure something, the less accurate your results, either because the sheer act of your measuring or observing alters the thing you're trying to measure, or because the two variables simply cannot be known at once.

Sometimes it's best to use peripheral vision.

Where the hell are you going with this, Julia?!  Well, I'll tell you.  As you may have noted from my recent dearth of posting, I'm working pretty hard at "coping".  Dr. Luz has given me bits and pieces of homework to do to keep my mind and emotions going in a healthy direction.  And I'm surprised, frankly, that I cannot bring myself to post more about it all.

I had always assumed that I would have been a prolific and unquestionably interesting blogger, had I been doing this during the ugly year of loss that preceding my introduction to the blogosphere.  But I may have been wrong.

I feel fragile right now.  And I'm trying to honor that by not forcing the issue on many accounts.  In general, I feel like there are things I need to discover - but the more directly I look at them, the harder I analyze them, the more persistent and dogged I am in persuing them, the more the actual truth evades me.  Blogging, for me, can come dangerously close to over-doing it - a cerebral exercise rather than a purely emotional reaction; something practiced to present to the outside world. 

So for the next little bit here, I'm going to try and blog from a less polished, more gut-reaction sort of place.  And likely, a bit less frequently (shut up, I know that sounds impossible) than in times past.

The First Bite

Apparently, prolonged absence is part of my "process".  I know that makes for crappy blogging, but I'm certainly in a "do what you must" phase right now.  If you're still tuning in, you'll be happy to learn that I actually received a bit of good news today.  (I know!  I was shocked, too.  I made them double-check that the name on the file really was mine.)

Today I went to see my RE to have a heart-to-heart about my latest batch of uterine scars.  I was fully prepared to hear bad news and leave with surgery scheduled.  But to my surprise and great pleasure, I learned that my scarring isn't bad at all.  He has no concerns at all about any necrotic or calcified tissue and says surgery can wait indefinitely.  In fact, he said, were it not me, he wouldn't even deem surgery absolutely necessary before attempting pregnancy. (To be clear: we are NOT trying for another baby.  Not now, and perhaps not ever.)

Since it is me we're talking about, he suggested we take our time dealing with Caroline's tootsies, any possible genetic issues, health insurance quandaries, and the general questions of whether or not we even want more children before scheduling an appointment to plan surgery.

He also felt that the mini-pill could be preventing me from having a period, rather than just the scar tissue.  Once I've weaned Caroline (which is now not something I have to rush), I can go to a regular birth control pill and likely start regular cycles again.  [Insert grinning here!]  Yay!  Periods!  Who knew how much one could miss them?

As for my formerly-retroverted, newly-prim-and-proper uterus, he said there may very well be scar tissue in the abdomen, or that it could have just stayed upright for no good reason.  Apparently, that's not unheard of, especially after c-sections.  We may plan a laparoscopy in conjunction with the hysteroscopy whenever we get around to it.

But for now and the forseeable future, I can check my uterus off the list of shit to deal with. 

Now... onto the next bite: Caroline's intake work-up with Early Childhood Intervention is scheduled for tomorrow, followed by our appointment with the pediatric orthopedist on Monday.  Don't worry, I'm chewing slowly.

No Boys Allowed?

Wednesday morning - providentially, the day I'd scheduled my first phone session with Dr. Luz, my therapist - our pediatrician called to tell me what she had discovered while looking into Caroline's tip-toe walking and any link to Arthrogryposis.

She asked us to see a pediatric geneticist because she's concerned that we may be dealing with a form of X-linked Arthrogryposis.  With X-linked diseases, male children (who have only one X chromosome, their mothers) will display the full effect of the disorder - which, in our case, is lethal - while female children (who have two X chromosomes, one from mom and one from dad) will be only carriers or display a very mild form of the disease.  Clearly, lots of bells went off for me, since we've lost three* boys and have two healthy girls.  If this were the case, we would want to have me and both girls tested.  In my case, it would potentially explain our history with one unified theory, rather than three disparate shitty-luck scenarios.  It would also tell us whether or not trying for another child would be sheer folly - a 50/50 shot at best.  For the girls, it would arm them with information about their own parenting options once grown, as well potentially explaining the origin of Caroline's leg and foot issues.

But here's the kicker (oh, hell, who am I kidding?  there are approximately 18,091 kickers in this scenario): to my genetic counselor's knowledge (we're still friends from when she was involved in Thomas's diagnosis), there is no test for these forms of Arthrogryposis.  The pediatric geneticist, however, would be better equipped to tell us if that's the case.

Secondly, our pediatrician agreed that a visit to a pediatric orthopedist would be a good idea.  This will give us a clear answer as to whether or not Caroline has some cause of her tip-toe walking, rather than just being idiopathic (as is the case with the vast majority of tip-toe walkers).  He could also tell us if her symptoms fall on the supremely mild end of the Arthrogryposis scale, or not.

I feel confident that none of this really impacts Caroline's prognosis or treatment - regardless of the cause, the treatment all follows roughly the same course.  I'm really not all that worried about her, overall.  At least I don't think I am.

But let me assure you, the idea of carrying a disorder that is fatal to all my boy babies - and of possibly passing along this disorder to my girls, who consequently could have no boy babies of their own... well, that's thrown me.  And thrown me far, at that.

I'm doing my best not to "write the end to the story", as per Dr. Luz's request.  But Wednesday proved to be a rough day, nonetheless.  And I'm sure the rest of this year will provide more "opportunities" to revisit the past than I ever anticipated.

I'm sure all talk more about my feelings and the multitude of possibilities that have tumbled my way as a result of all this... but not right now.  That's how you eat an elephant: one bite at a time; and you don't start with the ass.

__________________________________

Update: Apparently, my understanding of X-linked disorders is off.  Here's a better explanation.  Still highly worrisome, but with a potential for unaffected babies.

A Rough Go of It

Sorry for the silence.  I don't think I'm doing so well.  Caroline's potential issues and my Asherman's have resurrected the Habitual Trauma Searcher.  One minute I'm coping just fine, the next I'm crying after a relatively reasonable phone conversation with a nurse. 

People keep telling me not to do any searches regarding Caroline's developmental progress.  I understand their good intentions.  It's true that searching through Google and assuming that every dire possibility applies to you or yours isn't healthy.  But I also have to say that if it weren't for the internet and a respectably discerning eye when it comes to what may or may not apply, I wouldn't be where I am today.  Sometimes, it's just you out there hollering in the dark and advocating for yourself.

It just so happens (or maybe it's no coincidence - ay, there's the rub) that searching for information on tip-toe walking, W-sittting, and curly toes leads to many mentions of terms like "contracture".  It sends me right back to our diagnosis with Thomas.  And I mean RIGHT BACK THERE.  It isn't a pretty place.  PTSD can be an ugly thing when it comes to flash-backs.

I can say all this knowing full well that no matter what, Caroline is not Thomas.  She is infinitely healthier.  I know that.  But that primal desire to protect her and do whatever it takes to keep her well and happy - it just takes over.  And it's quickly followed by that feeling of helplessness and failure that comes from knowing you cannot control everything.

Ugh.

I'm setting up some phone conversations with my therapist from the days of yore.  I need to climb out of my own head for a bit.

Cooter Cobwebs, The Remix... Yet Again

Once again, we mark the passing of my biennial pilgrimage to my local radiology clinic to visit the soothsayer known as the HSG.  If you ask me, everyone should have their cervix threaded by a catheter and their womanliest organ flooded with contrast fluid whilst they lay on a hard table and tilt their pelvises this way and that.  It's a real kick in the pants.  Or the crotch.  It's You Choose the Metaphor Day at Uncommon.

Having become somewhat of a professional connoisseur of this particular procedure (this was my fifth one), and the world-recognized expert in all things hysterosalpingogram-related (go ahead, just ask Google)... wait just one minute there, sister!

[I used to be inundated by google-search hits about HSGs.  Sure, most of them were misspellings, but still.  I must have fallen off the first page because I haven't received traffic from an HSG-related search in weeks!  Hmph.]

Where was I?

Ah, yes: on a cold hard table.  This time 'round, the technician was more forthcoming than usual. Perhaps she was wooed by my wrap sheet - I mean medical history; a two page Word document that I created and update for occasions just like this.  She even used big words like "occlusion" and didn't side-step my direct questions. 

I'm not a doctor, but I play one on TV, so I wasn't surprised at all to see a very clear clump of scarring on the right side of my uterus, taking up to perhaps 45 or 50 percent of the cavity.  At one point, I could even see the strands of scar tissue reaching from the side to the top (that's fundus, for you pros). 

"Your tubes are both open, but clearly your doctors will want to evaluate this area here," said the tech, " and decide how to proceed." 

Clearly.

It's amazing how much blase calm comes with having been down this road.  I barely skipped a beat as I phoned in the results to Todd and hurried home for some work deadlines.  Really, the only interesting (that's potentially frightening, for you pros) thing about it was the fact that my historically fall-down drunk tilted (that's retroverted, for you pros) uterus was not.  It was standing upright, making the translation from screen to my brain much easier than when it's upside-down and viewed from a outsider's vantage point.

But what's wrong with that? you ask.  Well, as it was explained to me, once tilted, always tilted.  Even after pregnancy, the retroverted uterus will limply sag down to its normal position like a deflated balloon.  Unless... unless something is tethering it into place.  Something perhaps like scar tissue between the outside of the uterus and the abdominal wall.  Something that just might correlate to the deep dimples I have at each end of my latest c-section incision where the sutures never released.

Again, I'm no doctor, but it did get a little eyebrow raise out of me.

I should hear from the actual medical professionals entrusted with my care before the end of the week.  Then we'll have to decide a number of things, like timing, financing, and whether or not I'll have to wean Caroline in order to go through the follow-up hormone treatment.

Meh.