PTSD

So, here’s the thing.  I’ve got a lot of crazy swirling around in my brain right now.  And, what makes it an even crazier brand of crazy that just your normal, run-of-the-mill crazy is that I don’t even know if this crazy is justified.  I vacillate between thinking I’m one small step away from totally losing it, and getting terribly, horribly angry that my totally justified fears and concerns aren’t being heard.

Ok, to back up.  Yesterday was my regular 6-month follow-up with my thyroid doc.  Let’s call him Dr. Useless.  (I much prefer his PA, Mr. Has-a-Heart, but neither one holds a candle to my old practice back in the days I lived in civilization.)

Though I was discouraged to be seeing Dr. Useless, I was anxiously awaiting the appointment.  See, things have been weird with me lately.  Where to begin?

  • I lightly bumped my knee on a chair during the last week of July.  The next morning I had a bruise the size of a refrigerator.  The bruise got bigger and badder and more painful for weeks.  It was throbby and purple well into August and now, the last few days of September, it’s shadowy remains are still visible.  This caused me to notice that I was bruising A LOT and healing at a glacial pace.  That time N clung to my arm at daycare dropoff?  Yea, did more than hurt my soul – I’m still carrying around a baby thumbprint bruise on my upper arm 3 weeks later.
  • Now, my office at the job-from-hell is inhumanely cold.  (Like averages 60 on a good day cold.)  But, even still, fingers shouldn’t go blue this easily.  Especially not when accompanied with pins and needles and numbness.  And not when it happens in a comfortable living room nearly as often.
  • My head pounds.  A lot.  Have I got stress?  You betcha.  But enough to make my ears ring and vision go wonky?  I don’t think so.  At least, I don’t get why it’d be that bad now.  I mean, dad’s dead, estate taxes filed, things are actually, gulp, calming?  Har har.
  • Oh, and my weight.  I’m 40lbs heavier than when I started my successful IVF cycle and a good 10lbs heavier than the day my water broke.  Yes, that’s super duper discouraging.  But, then again, I’m still not at my all-time heaviest pre-thyroid diagnosis.  These things come and go, no?

I enter the appointment armed with my list, in exactly the above order.  Well, if you were on Twitter yesterday you probably saw the fallout.  I’ll provide the Cliff’s notes version:

Apparently I'm a fat ass

Yes, I’m bruising, I’m turning blue and tingly, and have regular severe headaches.  Add this to already diagnosed Hashimoto’s, PCOS, antiphospholipid antibodies, and endometriosis.  And a diagnosis history that saw my Hashi’s get off the charts severe before it ever was detected.  My instinct was that yes, of course, we’d discuss my weight.  I mean, I have a mirror and an awareness that I’ve gone back to the potato sack section of my closet.  But, call me silly for thinking that we’d discuss weight in the larger context of a whole host of other unresolved questions.

Nope.  Do you want to see what my visit summary says.  (Reminder: This was a prescheduled, regular 6-month followup for a diagnosed and historically difficult to control case of Hashi’s.):

follow-up summary

Uhhh, alright then.

So, as I sat listening to the “small risk” of suicidal ideation or severe depression or risk of seizures (“Oh, you don’t have a history of seizures, do you?  No?  Great!”) that accompanied the weight loss pills Dr. Useless wanted to prescribe me, I got angry.

On the drive home, that anger turned into deep, deep sadness.  Today, I’m verging on profound hysteria?  Paranoia?  Reasonable dismay?

My mom died of gall bladder cancer at 48.  She lived for years with pain and was told to lose weight, find a hobby, and see a counselor.  She was diagnosed on my 18th birthday.  She died a few months after my 19th.

My aunt was visiting her sister, my mother, in the oncology ward.  A nurse noticed a nasty burn that really refused to heal.  She recommended she see her PCP for some testing.  A few months before she buried her only sister, my aunt was diagnosed with leukemia.  She was 50.  After years of experimental treatments – some of which made her so miserable she begged for death – she’s in remission.  For now.

My grandfather died at 62.  Heart attack.  My mom found him dead in his chair.  He’d been there all night with my grandmother, his wife, calling down for him from the bedroom.

My grandmother was in that bedroom after suffering a debilitating stroke at 61.  She lived into her 70s, but spent my entire life in a nursing home.

My dad lived longer than I can ever hope to.  He made it to 73.  We blamed his confusion on his alcoholism.  But still, he went from a little confused to softball sized brain tumor to dead in about 9 months.

Family medical history isn’t a promise.  I know that.  I truly do.  But, it does matter.  And, that history above was a small part of what drove me to find answers in my 20s to my own medical complaints.  Overcoming infertility was priority number 1, but living a better, longer, healthier life – whether with or without children – was also always in the mix.  So, I made finding answers, getting the good doctors, and securing the most effective treatments a full-time occupation.  I researched, I wrote, I questioned, I pushed, I educated myself which turned into educating others, I embraced being “that patient.”

It was utterly exhausting.  And, to be totally truthful, I never really achieved a feeling of true health and well-being until I was pregnant.  Pregnancy was awesome.  Aside from my body doing that totally average task of growing another human, it also just. plain. worked.  Like, for the first time.  Ever.  I joked with my maternal fetal medicine doctors and nurses that I would happily go through labor every 9 months for the rest of my life if it meant I could feel like I felt then.  And, now on the other side of an unmedicated, natural laboring experience, I would still say the exact same thing.

So, now I feel like I’m circling back down the drain again, but it’s even worse this time.  See, now I have the the knowledge that even an immense amount of time and effort (and, let’s be honest, time and effort I don’t really have with an adorable and mischievous 15 month old in my life) still probably won’t result in me feeling as good as I’d hope to feel.  It’s hard not to feel like well-being is always going to be elusive.

And, that fatalism mixes with the knowledge of my family’s mortality and leaves me fearful.

I don’t want to die.

Melodramatic much?  But, yea, welcome to my current headspace.

I know what I should do.  I mean, I just need to heed my own words.  Find the right doctors.  Do my own homework.  Be relentless.  But I’m just so very, very tired.  And I can’t believe I’m back here.  You know that feeling you get when your computer crashes and you lose all your work after pulling an all-nighter right before a deadline?  Yea, that.  Except I’m the computer, the operator, and the deadline all wrapped up in one.

United in stunned disbelief: A blog rec

I’ve kinda been all over the place lately.  I spent my first 3 nights away from N this past weekend.  I had to go out and start attending to my dad’s house.  (The sheer volume of mouse droppings on his countertops when I dragged myself in the door after an epically bad 8.5 hour drive assured me that the trip was necessary.)  All three of the ButIf’s, not the least of which the littlest ButIf, have been sick off and on since at least November.  The hubs and I, both still recovering from last month’s pneumonia diagnoses times 2, are struggling to identify our roles as parents, to find a schedule somewhere in this life that has absolutely refused to be scheduled.  Dealing with orphanhood has also been weighing me down.  Not just the obvious emotional toll, but also the medical bills, the calls to the estate lawyer, the drive to pick up the cremains, the arguments with water companies that expected his bill to be paid on time despite the fact that their customer died the day before his bill was due…  I digress.  But, finally, my health has also been a constant elephant in the room.  I’m in pain a lot these days.  Surely all the driving and the physical exertion at my dad’s house isn’t helping, but no 31 year old should hurt this much.  Tingling hands, aching legs, the reemergence of the hip rash, weighing 10 pounds heavier at 9 months postpartum what I did the day I delivered, a back that causes constant, sleepless pain.  Next week’s rheumatologist appointment can’t come soon enough.

But, as I circle the wagons in preparation for another battle with medical professionals (albeit one that I still have some respect for), it’s causing me to reflect on my experiences with the medical field.  To put it simply, I’ve been failed just so many times.  And the cause hasn’t really mattered.  What unites my experiences navigating the medical diagnoses of infertility, repeat miscarriage, endometriosis, Hashimoto’s, PCOS, and my as of yet undiagnosed spondyloarthropathy is one thing – I’ve had some truly baffling responses lobbed at me.  The college health center MD who, upon first suggesting PCOS as the reason for my missing menses, casually stated to 20-year-old me, “You’ll be infertile, but otherwise you’ll be fine.”  The PCP who recommended a hobby and counseling would cure my uncontrollable and unexplainable weight gain.  The OB/GYN nurse who spent 10 minutes badgering me to tell her exactly which prenatal vitamin I’d been taking, even though she knew that day’s appointment was the one at which I’d be told that I needed to terminate the suspected ectopic pregnancy I’d been carrying after 18 months of trying.  The phlebotomist who offered to be my surrogate because, “I get knocked up whenever my husband looks at me!”  The other OB/GYN who, upon learning I’d relocated to the area, was infertile, and was going to be pursuing more infertility treatments, kept talking to me about the REI in the big town up the road (apparently years of medical school and residency in the field of obstetrics didn’t dissuade her of the notion that one goes to a sporting goods store to treat infertility).  The rheumatologist who told me she couldn’t help me until my disease had progressed to the point that I could no longer function.  The common thread is the sheer WTF-ness of it all.

And, I’m not alone.  That’s why I was happy to stumble upon the new blog You Need a New Doctor.  There’s a few things that sharing these truly horrifying stories can do.  They instill solidarity in those of us who have endured them, they let us know that (sadly) we are far from alone.  They give us a chance to laugh (or cry) along with a community of fellow-travelers.  They shame a system that has repeatedly failed us.  They inspire us to help make the system change.  They let external observers in on the dirty little secret that one person’s “unfortunate bad experience” is, in fact, an entire community’s burden.  We can do better.

So, please check it out.  And, while you’re there, check out my own submission about my third miscarriage – Thanks for the Jar?

Finding me

How many times have I made promises to write more?  To return to the blogosphere?  To reinvigorate my Twitter presence?  Too many.  Far too many if you count the silent thoughts that went unrecorded.  So, this is definitely not me making more promises I won’t keep…

But, I had a realization yesterday.  As I sat with my therapist and reviewed dad’s health (re-hospitalized, poor, and fading), N’s sleeping (non-existent), my marriage (strained), my career (overwhelming), and my health (rocky and ignored), she said something that surprised me.  As much as I’ve come to respect and embrace my need for our sessions, I’ve still always subconsciously conceptualized therapy as a highly narcissistic thing.  What could be more self-centered than an hour exploring the self?  So it felt out of left field when she observed that I seem the happiest when I’m helping others.  Was this just a compliment to help walk me back from the edge that’s become my life?  Had I really fooled her into thinking of me as this give give giver?

But, then, I really mulled it over.  Who am I now?  Who am I beyond a grieving daughter and proud mother?  What makes me me?  What makes me happy?

It’s then that I realized that, where others have hobbies, I have the cause of infertility.  The drive to help the young and chronically ill.  To walk others through the minefield that is an undifferentiated autoimmune diagnosis.  And, I miss that part of me.

Infertility can never be “cured,” but it can recede into the shadows.  It absolutely has for me, especially since the tumult of September.  And, a large part of what makes me me went with it.

I miss my RESOLVE support group.  I miss who I was when I was sitting in the front of that often very crowded hospital conference room.  I miss discussion forums and surprise questions from Facebook acquaintances and teary phone calls from women’s whose menstrual cycles I knew as well as my own.  Being an infertility advocate was my club sport, my crafting, my recreational time.  It’s left an odd void.

Yet, my relationship with infertility is still forever changed thanks to my son.  I can’t go back and feel those feelings as deeply, as wholly, and as painfully as I once did.  They, too, are shadows of what they once were.  And that makes me feel like an intruder in my own identity.  A fraud.

I need to rediscover my role in this community.  Because, yes, my therapist is right.  No past time makes me smile brighter or cry harder than advocating for the rights and opportunities of young women facing infertility and autoimmune disease.

In a wonderful stroke of coincidence, this realization has dawned just as announcements of RESOLVE’s Advocacy Day 2015 hit the airwaves.  I can’t fully commit to attending just yet – my life is a whirl of unanswered questions thanks to cancer – but I pledge now to try and make it this year.  Won’t some of you join me?

On the verge…

… of parenthood?  Of breakdown?  Of both?

I keep trying to figure out why it is that I’m having such a hard time writing about my pregnancy here.  The posts flowed so much easier when I was under the influence of Gonal-F and endlessly waiting for the next laparoscopy, the next cycle, the next miscarriage.  At first I thought it was the inevitable IF guilt.  That deep-seated uneasiness with the fact that I was “moving along” while others were left to do the same things over and over again in the hopes of a different outcome.  Or left to rightfully rail against the very concept of hope itself.  And, yes, that guilt did factor in; but, I think, less than I initially thought.  Ultimately, the primary issue is I don’t know how to live and write equally in the lands of fear and joy – a skill that pregnancy after IF requires.  I’ve known what I felt, what I’ve wanted to say, what I’ve secreted away in my mind these past many months, but I just don’t know how to put it to paper.  Or even if I can put it to paper.  I’ve returned to the realm of the bogeyman, where it feels as if what I think, what I say, what I write will automatically land me in the bad graces of those unseen beings who decide my fate.  The simple act of sporting this belly feels like a daily act of hubris, for which I’m constantly sure I’m in for a rude awakening.

In trying to decide why this all feels so, I’m struck by how similar the IF and PG-after-IF emotions I’m feeling are.  Top of the list at the moment is the seesaw.  With twice weekly non-stress tests at the perinatal center I feel like I’m, once again, living from appointment to appointment.  Every three to four days my psyche is formed by the lines on the NST ribbon and the words of that day’s nurse practitioner or midwife.  One day I’m told how grand I’m doing (“minimal weight gain, stellar 1-hour glucose screen, you’re a rockstar!”), and the next I’m discussing the possibility of a looming c-section (“he’s still breech and, since we’re taking you off of the Lovenox at 36 weeks anyway, we might as well just do a c around that time!”).  A week ago one of my favorite midwifes poo-pooed the early c idea (“you’re still so early, and there are things we can try!”), only to have another preferred practitioner inform me this Monday that I had suddenly developed polyhdramnios (too much amniotic fluid) and we, “desperately need to get to the bottom of this!”  In a few short hours I trek an hour north again for a full afternoon of ultrasounds, NSTs, blood tests, and consults.

I’m exhausted.  Even at its best spending 5-6 hours each week in the car on the way to and from appointments is tiring.  Another 3-4 hours each week in waiting rooms and on exam tables doesn’t help.  Adding in the need to keep up with my full-time job during one of the busiest times of our semester brings me close to the edge.  When you factor in the frequent Braxton Hicks chipping away at my physical and mental stability I’m pretty much done for.

But all those stressors are the easy ones.  The ones that aren’t that hard to write.  The ones I start my therapy sessions with.  The ones that get me pity from most ffergiles and justifiable dagger-eyes from those still waiting to parent or finding peace in the decision not to.

Then there’s the much louder chorus of other concerns for which I have a private concert.  Most days I wake up waiting for the first kick or rumble.  As I pray for it to come, I run through what life post-still birth would look like.  I watch it play out from outside my body; me, sitting in silent grief and despair in our darkened bedroom, the mister bringing me food and handling the obligations of daily life as he cries alone in the shower.  Our families not knowing what to say and, likely, taking it even harder than we do.  After all, we’ve walked these halls before.  The failed cycles, the dashed dreams, the early losses go, if not unfelt by those in our inner circles, at least a lot less felt than for those of us with front row seats.  Soon, these morbid morning thoughts are replaced with anger, nearly all of it directed solely at myself.  What have I been doing for the past five years if not running and screaming from medical office to office demanding something was wrong?  Insisting I was sick?  How could I relentlessly pursue diagnoses in one breath, while doing everything in my power to become pregnant in the other?  I often feel shamefully selfish, and that’s really hard to admit.  For 4.5 years I’ve allowed the words “brave,” “determined,” and “driven” to shelter, protect, and uplift me.  Now I often feel like a fraud and a failure.  If we lose him, I am to blame.  My body did it.  And, most of all, I should have known better.

But, then he kicks.  Or he hiccups.  I catch a glance at the nursery.  Or I sit down to work on my shower thank you’s.  The mister gets misty in the eyes looking through the story books his parents gave us.  Or I find myself subconsciously rubbing my belly.  And it all melts away.  I’m quite easily the happiest I have ever been in my life.  I love my husband beyond words as he talks to our son and dreams of the future.  I miss my mom desperately, but I’ve never felt as connected to her as I do in these on-the-verge-of-mothering moments.  The contractions and kick counting are often overwhelming, but they always remind me that I’m living a moment in time I truly never thought I’d see.  For all that I’ve dreaded showers over the past five years, my own were beautiful and surprisingly cathartic.  And, not the least of all, I feel the healthiest I have in my adult life (no “unknown rheumatalogical condition” back pain or rashes, no endo constipation or crippling cramping, no Hashi’s fatigue or brain fog, no PCOS weight gain or hunger pangs).  Life is really, truly, deeply wonderful.

And, at the same time, life keeps on moving and fear keeps on sneaking in.  In the past week I registered for daycare, set up an appointment with our desired pediatrician, started really putting the nursery together, and continued planning for my maternity leave from work.  Yet, each time I cross one of these items off my to-do list I can’t help but feel like I’m adding them to a “what we’re going to have to undo” list.  I feel like I’m laughing at fate by planning for a child that may or may not arrive safely.  I can’t help but see myself un-registering, appointment cancelling, un-prepping the nursery, spending the summer in my desk chair.

The seesaw keeps rocking at the peak of a mighty mountain and I know I’m destined to fall off.  I’m just not sure which tranquil valley or cursed forest I’m perched above…

Complacency

It’s been well over a month since my last post.  That’s the longest I’ve gone without checking in here by quite an order of magnitude.  And, to be honest, putting virtual pen to paper here and now feels odd and discomforting.  It’s almost as if this space I birthed nearly a year ago is no longer mine, no longer of me, no longer for me.

In the simplest terms, I’ve been too scared to write.  As the weeks have ticked on I started settling into an unanticipated, yet easy complacency about this pregnancy.  The modifiers I’ve most frequently found to define the word “complacency” are smug or uncritical.  Neither of those have been in my emotional lexicon for the past 4.5 years.  The idea that I’d fall back on them to describe the past month, particularly the past month of my pregnancy, is downright shocking.  But, it’s been good; complacency’s been wonderful.

It’s been tremendous to walk into appointments with my MFM, his midwives, their nurses, and feel confident, supported, and, above all else, trusting.  Yes, I ask follow-up questions, request longer explanations when necessary, and speak my mind (and gut) at every opportunity, but the past few visits to the regional perinatology center have been the first doctor’s appointments I’ve attended in nearly half a decade where I haven’t walked in shielding my emotions behind an invisible layer of battle armor, where I haven’t prepared several pages of questions in advance, where I haven’t spent hours the night before setting my mind straight for the next day’s ordeal.  Instead, I’ve played the grateful patient to my practice’s caring and attentive guide.

It’s been overwhelming and surreal to feel our little man grow.  Even as he’s increasingly begun using my bladder as his own private trampoline, I find myself in awe of these jabs and flutters I often thought I’d never know.  I saw him on a regular growth scan two weeks ago.  Aside from leaving with indisputable visible evidence that, indeed, we are not jinxing ourselves by accepting all those baby blue hand-me-down clothes from friends and neighbors, we received the good news that all is well and he’s spot on the doc’s target for size (54th percentile).  With each kick I’ve felt a little more freedom from the fear that had encompassed me.  The morning I hit 24 weeks (sometimes referred to as “viability day”) I cried in the shower while silently saying, “Thank you.”

It’s been tiring preparing a nursery.  Since my last post the room was gutted to the studs, drywall was installed, and paint was painted.  (A chipper shade of yellow that makes me smile each time I walk by.)  We still have to lay new flooring (this weekend), and have the contractor replace the cracked windows and install a new heater (Mr. But IF doesn’t do electrical or heights), but I’m thrilled with our progress.  Even having our hot water heater spring a leak (well, a geyser) mid-way through painting couldn’t abate my delirious joy on painting day.  Yes, it really did kind of suck to wash up in freezing cold water, but I chuckled and joked with the mister as we drew straws to see whether “ma” or “pa” would get to have the first go in the bath water we’d boiled on the stove.  It wasn’t lost on me that uttering those two-letter country colloquialisms didn’t sting nearly so much as it would have a year ago.

Of course, the thing about finding a groove – or, in this case, embracing the complacency – is that sooner or later it’s gonna end.  The other part of the common definition of complacency is, “satisfaction with oneself or one’s achievements.”  Having an easy pregnancy this far is not an achievement.  It’s pure dumb luck.  And, given enough time, there’s always going to be a reminder that one’s luck is subject to change.

When I woke on Friday I felt like I’d been hit by a truck.  Work had been (and continues to be) extremely stressful.  We’d been engaging in the aforementioned hectic nesting for the entirety of the prior weekend.  And, then, I’d spent each night all week alternating between celebrating the Mr.’s birthday, attending to social obligations, and participating in after-hours work events (because, clearly, only 8-9 hours of work torture a day is NOT enough!).  The waters were looking rough when, on Thursday afternoon, I returned to my office after a particularly unpleasant meeting with the boss and big boss to see a blinking red voicemail message from my therapist asking why I’d missed that afternoon’s appointment.  (“Oh shit,” I thought, “I’m so overwhelmed I’m even fucking up at therapy!”  And, then I proceeded to let my missed therapy session – you know, those things I go to to vent and let out the negativity? – eat away at my mental well-being for the next, oh, 4 days.)  So, when I woke up barely able to function on Friday morning there was a simple strain of “uh oh” being repeated in my head.

As I sat at my desk that morning, I realized the world was blinking.  Well, not the world, per se, but how I was seeing it.  Large patches of black inkspots swirled in my vision in tune to the beat of my heart.  My right hand began tingling and, over time, became numb.  I remembered the difficulty I’d had zipping up my snow boots due to suddenly swollen ankles that morning, just as I started getting a pounding headache.  For an hour and a half I ignored it all.  I hid in my bubble of complacency.  I reminded myself that – despite my rock-star high-risk doctors – I had the world’s most perfect pregnancy.  I mean, it was nice and all to be labeled “high risk” because I got really attentive care, but that label only stemmed from an excess of caution approach from my former OB and my own aggressive approach to the scary, early, “bad” days of pregnancy after IF.  And, you know, that teensy-weensy autoimmune disorder that could threaten my life and that of our unborn child at any moment. Finally, I texted the mister with a simple, “I REALLY don’t want to worry you, but I don’t want you to get mad that I hid anything from you.”  As I spelled out “numb fingers,” “headache,” “vision trouble,” and “ankles the size of ham-hocks,” I realized I was a disillusioned idiot.  As he read the above he typed them dutifully into Dr. Google and immediately demanded I call the doctor as each was a sign of pre-eclampsia (one of those lovely pregnancy complications I’m now predisposed to… woot!)  I called, they requested I find a way to get my BP ASAP and to “stop dismissing these troubling new symptoms.”  Soon I was off to use that home blood pressure cuff the Mr. had bought in the bad old days prior to his weight loss and running obsession.  But, not before crying in the bathroom at work.  Not before visualizing the world crashing down around me.  Not before envisioning bed rest, hospitalization, and an incredibly premature birth.  Not before cursing myself for my complacency.

Once at home the trusty blood pressure cuff mocked me as it reassured me.  106/79.  Exceptionally normal.  Brilliantly low.  Thank-you-baby-Lord-Jesus average.  Another call to the triage line told me that, while troubling, none of the new symptoms was cause for concern UNLESS accompanied by an elevated BP.  It was 1pm on a Friday afternoon and I fully embraced the bed rest and increased fluid intake recommendation I received.  I slept most of the rest of the afternoon, greeted the mister home from work at 7, ate dinner, and was promptly asleep on the couch by 9:30.  Ten additional hours of sleep followed.

So, I guess I’m “fine.”  I’m still shaky off and on, the black spots keep finding me, and the fatigue is no joke (I brought my laptop to bed with me to write this… when I went to bed… at 7:30).  But, in the grand scheme of things, I guess I’m just as lucky now as I was a week ago.  However, one thing I’m not any longer is complacent.

I was too scared to write when there was little to write about, but I’m finding it easy to write now that I’m scared.  I don’t know what to make of any of that at this moment, but I do know it feels good to be back here, to once again feel so many of you walking beside me and supporting me in ways large and small.  Complacency’s overrated.

The breakup

Last night I tweeted:

Welp, another bad blood test result. My OB is transferring my care to regional perinatology center. So fucking terrified right now…

I could probably just save myself a lot of time and leave this post at that.  It pretty much sums it up.  But, I won’t.  Mainly because I’m, well, fucking terrified.  And pissed.  And numb.  Somehow all at the same time.  And whining on this blog is usually something that helps with those feelings.

If you missed my post from earlier in the week, you should probably catch up there before going any further.  I don’t have the energy to review it all again.  I don’t have the willpower to make myself reread and recount a post that ended so (relatively) hopeful and optimistic.

At Tuesday’s reassuring appointment, I also talked the doctor into running a few additional blood tests that my old reproductive immunologist has recommended.  Again, the OB happily consented, but felt it was unlikely the antiphospholipid antibodies would be elevated since they’d tested normal so many times before.  Last night he called back to inform me that, while only one of the two antibodies he’d tested was back, it was, in fact, very elevated.  And so were my complement levels.  After reviewing the results he placed a call to our regional perinatology center seeking advice.  (Have I mentioned I love this man and his teensy, tiny ego?)  They reassured him he was doing all the right things – steroids, lovenox, careful monitoring – but, also informed him that it was probably time for my case to be transferred over to their center.  Put simply, a crisis is going on in my body for an as-of-yet unknown reason, and there’s no way we can continue the charade any longer that I’m just a normal pregnant lady.  I need the highest level of care around, and that comes from the center that serves the 9 counties in my part of the state.  I’m lucky, it seems, to only have to drive an hour to see them.  Though, “lucky” isn’t really a word I’d use to describe myself and my situation right now.  Lucky, it seems, is something I’ll never be.

Of the antiphospholipid antibodies tested, the anticardiolipin has yet to come back, but the hexagonal phase phospholipid nuetralization is sky high.  Like any good patient experienced with chronic illness I immediately Googled “lupus anticoagulants and pregnancy.”  Of the seven results that appeared above the fold on my laptop monitor, five included some combination of the words “negative pregnancy outcome,” “intrauterine deaths,” “miscarriage,” or “still birth.”  So, yea, there’s that.  Basically, the ANAs let us know that antibodies are attacking my body; the positive APA lets us know that at least some of these antibodies are attacking fats – or phospohlipids – including those fats in my cells and cell membranes, including blood cells and the lining of blood vessels.  The theory goes that as blood vessels are attacked, tiny clots can form, and those tiny clots can take a trip to the womb, get stuck in the placenta, and block the flow of nutrients from mother to baby.  Basically, my body may suffocate my healthy, happy kid.  Because, you know, that isn’t remotely fucked up or unfair in any way.

So, despite all odds, I have a happy, healthy baby inside me, grown from a crop of happy, healthy embryos, in a petri dish that made a much better home than my fucked up body ever could.  No one is willing to speak in certainties with these things, but we’ve got pretty strong evidence at this point that my last loss at least (and perhaps others) was from exactly this scenario playing out, but earlier on in the pregnancy when the embryo had no placenta to protect it from my immune system.  Turns out it was probably a pretty good call for me to demand dexamethasone and lovenox be added as part of my IVF protocol as the combination of steroids and blood thinners in the first trimester may have helped stop an immune flare that could have taken this pregnancy just like it took the last.  But, as I weaned off the dex as instructed at 9 weeks, my body was suddenly free to fuck up once again, and a flare of some sort began.  So, now we’re back to square one.  But, further along in so many heartbreaking ways.

I can’t control my thoughts.  They flit and float from once thing to the next without warning.  Overall, yes, I’m fearful for our baby.  For the innocent that my body might destroy.  But, then there are times I sink into a sea of self-pity.  WHY is this happening to us?  How have I not given enough already?  Why am I ringing in my 30th year with yet another health scare, yet another series of doctor visits and tests, yet more questions without answers?  And then, I get angry.  So very angry that this is my life.  That I spent so much of my 20s battling for health, and now it appears my 30s will be more of the same.  Angry that I know so much about the medical system and medicine despite being in a totally unrelated field.  Angry that I’ve given my husband a chronically ill wife, after he had to spend so much of his time surrounded by a chronically ill father.  Angry that I don’t even have my mother to cry to because cancer took her from me.  Angry that, should we succeed and bring a child into this world, my health may keep me from being the mother I always wanted to be.  Angry that my body may kill my child.  And then I feel selfish.  Selfish for wanting a child so badly that we ignored these warning signs.  Selfish for fearing for my own health when my child’s life is at risk.  And selfish for crying about the risks to the growing being inside me when so many others would give anything to have even a high risk pregnancy when the only other option is never experiencing pregnancy at all.  And from this flitting and floating (and likely also the all-out war that is going on at the cellular level within me) I end up exhausted beyond belief.  I now know why I never received the long-promised energy boost of the second trimester.  I now know that even this pregnancy will be a battle; that our fight didn’t end after conception, after the heartbeat, after a beautiful NT scan and quad screen.  Our fight, in many regards, is just beginning.

And of all these emotions, the one tiny pin that dropped and broke that giant pane of glass?  Hearing that my doctor was dumping me.  The doctor that listened and cared and has called me more times than I can count on evenings, on weekends, on holidays.  That was it.  That was the moment it all tumbled down.  For all my independence and doctor-loathing, I’d somehow come to need this man for strength and guidance and reassurance.  Now, we start all over.  Sure, my new doctors will be the tops in their field and have the health of me and Baby But IF front and center, but I’ve had too many bad doctors to be fooled into thinking that they’ll certainly care as much (if not more) than Dr. T. did.  And all that just makes me all the more exhausted.

When an itch isn’t just an itch…

This weekend was amazing.  I outgrew my favorite jeans, and wore maternity jeans for the first time to our post-holiday holiday party.  At said party I chatted with the first-time mother of a 10-month old.  We talked symptoms and nurseries, play dates and day care.  Her husband took me aside and said bittersweetly, “I don’t know whether this will hurt or help to hear, but I just am so happy for you.  You don’t know how many times I’ve asked myself why it is we had A so easily, while the both of you have had to fight so hard.  It’s just so unfair, and I couldn’t be more thrilled for you.”  This weekend I was rocking zenned out happiness.

Yesterday was not amazing.  Yesterday, after weeks of happy absence, the fear came crashing back.  The doubt my body could do this, the suspicions that we would ever have a happy ending.  Yesterday I talked lab results, waited hours for a doctor’s call-back, hit up those medical journals yet again.

Today?  Today I’ve mostly found peace.  I’m celebrating a doctor that listens (and makes after-hour calls and last minute appointments).  I’m taking my new pills.  I’m finding comfort in this familiar discomfort.  And, I heard baby But If’s heart beat.  No day can be a bad day when that’s a part of it.

It all started on Thursday.  A routine prenatal visit.  Actually, it was my first visit to the OBs that wasn’t super exciting.  It was “routine” in every way possible, and that was new.  I yet again peed in a cup (who knew that 4.5 years of practice would come in so handy?), I reviewed my symptoms, I heard the heart beat with the doctor’s doppler.  That was about that, and he perfunctorily asked mid-way out the door if I had any final questions.  Well…

On the long drive up to his office I’d been debating whether to mention something strange that had been on my mind.  You see, it’s not a drive to an appointment if I’m not pre-planning my conversations with the doctor.  Anyway, over the past couple of days I’d noticed an itchy rash developing on my hips.  And, increasing joint pain.  But, you know, 17 weeks pregnant and all, how silly must I be to be concerned about skin changes and joint pain?  But the hip thing had me startled.  If you’ve been around here for a while, you might remember I’ve mentioned my itchy hips before.  And the last time I off-handedly mentioned these ample hips of mine to an MD it got me sent for additional blood work.  And, then that blood work came back, well, off.  So off that we were forced to stop TTC while the elevated anti-nuclear antibodies (ANA) were investigated by a rheumatologist.  A rheumatologist that turned out to be both prone to cancelling appointments and utterly useless.  So, that’s how a mundane-looking rash was slowly starting to work me up to a panic.  I ultimately decided to go for it… what’s the point of all these appointments if I don’t regularly make myself look like a hypochondriac fool?

The OB, God love him, sat right back down and asked a few more questions.  He didn’t blow off my silly rash like, well, the silly rash it looks like.  He understood why I’d be concerned since the last time I’d had this constellation of symptoms I was in the midst of an unexplained miscarriage at 9 weeks after seeing several strong heart beats.  He reassured me that it was probably nothing, but did say he wanted to draw another ANA level just to “ease my fears.”  He was actually more gentle with my emotional state than I actually even needed him to be.  I wasn’t really concerned, per se, just curious.  He took that curiosity as blinding fear and reassured me as he left that the ANA was a quick test and I should call the following day (Friday) to get the results from the nurse.  “There’s no reason for you to worry all weekend!”  As he left the room I heard him in the hall telling the nurse to expect my call.  10 points for Dr. T.

Well, the next day I called, but, as so often happens, the reassurances of the receptionist that the nurse would call me back that day were overly optimistic.  I didn’t hear anything.  But, I also didn’t worry all weekend.  I put it out of mind.  I mean, I wore maternity pants and talked day care, for Christ’s sake!

Yesterday morning the results posted to my online patient portal.  1:1,250 homogenous pattern.  (Again, normal is under 50.)  I’m right back where I was after our last miscarriage.  I flew mentally right back to that place.  To the worry, the incapacitating fear, the dread.  The OB opens at 8AM.  I called at 8:01.

Turns out my OB was off doing surgery at another hospital all day yesterday.  A call-back from the nurse reassured me she’d message him.  A second call-back told me he’d replied to her immediately by e-mail and would call me as soon as he could get out of surgery.  So, having taken the day off work, I waited, ate chocolate, and watched Bomb Girls.  By noon I still hadn’t heard back, so I wrote a message to my former reproductive immunologist.  He replied back quickly with a few suggestions for additional testing (anti-XA to make sure my Lovenox dose was correct and another anti-phospholipid antibodies test to make sure I was still negative), but reminded me that, at his practice, he doesn’t even seen anyone past the first trimester specifically because he doesn’t believe immune/autoimmune issues matter much once the placenta has taken over supporting the pregnancy.  I mean, of course they matter, but not in the sense that they spell immediate doom to the pregnancy.  That helped to calm me immeasurably.

At 6:30pm the phone rang.  It was the OB.  He apologized for being stuck in surgery all day, and immediately got down to business.  I needed steroids, and I needed them now.  10mg of methylprednisolone for 7 days, followed by 5mg from the next 7, then a re-check of the ANA and my complement levels in 2 weeks time.  A flare of some sort is happening, and while it’s scary, he reassured me that 1. we caught it early, 2. this is not all that uncommon in someone with a complex autoimmune history, and 3. we’re out of the scary first trimester and have no reason to believe there is anything wrong with the baby just because my body is going haywire.  Luckily, the placenta is a fairly good nanny and keeps out most of the nasties my body seems prone to producing.  Then he said, “If you were my wife, well, I know you’d want the reassurance of hearing the heart beat again soon.  Can you come in tomorrow?”  I didn’t have the heart to tell him I’d been cheating on him with my home doppler, so that, combined with the fact that I NEVER pass up the opportunity for an appointment (and to pee in a cup), I said, “Yes, absolutely!”

Our appointment today went well.  I heard that thumping heart again, and he answered many of my questions.  We’re treating it as if I now have lupus and am experiencing a lupus flare, even though no rheumatologist (or any doctor for that matter) has been confident enough in my symptoms and lab work to label me lupus.  Lupus or no lupus, the treatment of an apparent immune flare is the same — short course steroids, followed by careful monitoring of my ANA and complement levels, as well as keeping a close eye on the littlest But IF.

It’s strange to leave an appointment where so much of the conversation was dominated by discussions of my new heightened risk of pre-eclampsia, pre-term labor, intrauterine growth retardation, and warnings to watch myself closely for other (lupus?) flare symptoms, with such a sense of ease and calm.  The drive for answers has been one of the few things that has kept me going on this sometimes unbearable journey to biological parenthood, when other options could have been investigated.  My gut told me that being diagnosed with spinal arthritis in my early 20s wasn’t right, that loosing 3 pregnancies (including a strong looking 9 weeker) didn’t add up, that an ANA that high surely couldn’t be nothing, that frequent fatigue and body aches that weren’t resolved by the best thyroid care I could muster made no sense.  Whether its lupus or not I really couldn’t care at this point, but seeing “nonspecific connective tissue disorder” at the top of my discharge paperwork this morning was a huge moment to me.  I’ve stopped believing that we’ll ever have all the answers for why we’ve had to go through what we’ve gone through, and have accepted that, no matter our need for answers, that for so many of us the answers will remain “It could have been” or even “We’ll never know.”  But having that label on that paper, having a doctor take my silly rash seriously, having a physician look me in the eye and thank me for bringing my concerns to him because, “It’s great we caught this so early,” that makes all the difference in the world.

I’m trying not to think to much about the future, to be honest, but am just focusing on the present.  Today we found some more puzzle pieces that were wedged in between the couch cushions.  Who knows if we’ll have the time, energy, or desire to finish the puzzle, but finding those pieces is a necessary first step.

Now, would I have given anything to avoid all this and continue on in my blissful, rash-free, non-lupusy, pregnant happy state for the next 6 months?  Fuck.  Yes.  But, if this had to happen, I’m glad this is how it all went down.  I’m glad that from 4.5 years of fighting, learning my body, and ceasing to give a crap what others think of me, I’ve come out the other side stronger and better able to help myself and ask others for help when help is needed.  I’m glad I’ve learned that sometimes and itch is not just an itch.

Help! I need somebody!

And, not just anybody.  I need a doctor who will treat my thyroid.  Who knew it could possibly be this hard?  But, I’m getting ahead of myself.

I waited with a fair amount of restless impatience on Wednesday for my latest round of beta results.  And, not just beta and progesterone, either.  I was pretty annoyed on Monday when I discovered my first beta draw didn’t also include a TSH check.  It’s been a standard part of my workup with every other (negative) beta for the past 6 months, so why they left it off this time is beyond me.  So, when my blood was drawn at 7:30am I requested that a TSH be added.  I got minimal push back from the nurse, but I’m used to fighting.  Anyway, blood exited the veins, and I was told I’d hear something by 11am.  At noon I hadn’t heard a thing so I gave in and called.

That phone conversation is hard to paraphrase, so let’s just do this Shakespeare-style.

Me: Yes, I’m calling for my blood work results from this morning.

Nurse: Uh, yea.  Still pregnant.  When do you want your ultrasound next week?  Wednesday, Thursday, or Friday?

Me: Wait, what?  What was the value?  What was the TSH?  How’s the Progesterone?

Her: Um, I gotta open your chart back up. Gimme a second. [Gum smack, gum smack.]  HCG was 256.  That’s fine.  When do you want your ultrasound and who is your OB?

Me: [Doing the math on the fly] But, that didn’t quite double from my 139 on Monday.  Are we really not doing another beta?  I won’t get anything else until over a week from now?  What about the other values?

Her: I don’t know what to tell you.  Everything’s fine, so there is no reason to retest.  You can see the rest of your results in the portal later today.  I already closed your chart again.  Call your OB.

Me: I don’t have one!

Her: Well, that’s silly.  Get one.  We will release you at 8 weeks and won’t help you from that point on.

Me: But I’m barely 4 weeks!  I’m not calling one.  Not yet.  I’ve had to cancel three OB appointments before due to miscarriage.  I’m not doing it again.

Her: Well, I don’t know what to tell you.  How about next Thursday for your ultrasound?  7:30?

Me: [In tears] Wait what?

Her: We’ll see you next Thursday, October 24 at 7:30am.  Call an OB!

After I was hung up on I sent an email to my boss saying I suddenly didn’t feel good and would be going home for the rest of the day.  I stayed home in my pajamas crying for the next 36 hours.  The Mr. and I spent an additional 90 minutes screaming at one another last night about how many more miscarriages we can possibly handle.  He said things like, “I just don’t have the energy to watch you miscarry 9 more times with 9 more perfect embryos!”  I heard things like, “Why did I marry this barren shrew who keeps killing my children?”  It was good times.

Equally good was what I found when I logged in to my patient portal teary eyed on Wednesday night.  Yes, the HCG went from 139 to 256.  Perfect is doubling in 48 hours or less.  Mine was on pace to double at 54 hours.  Not remotely terrible or doom and gloom depression-worthy, but that’s still the emotion it evoked.  After 4 years and 3 prior losses anything less that absolute perfection generates worry.  I’ve been full of worry ever since.

But, it turns out, the beta was just the tip of the worry iceberg.  My amazing progesterone on Monday of over 40?  Yup, dropped to a pathetic 19 despite daily Crinone suppositories and PIO injections.  Oh, and that TSH they had no intention of running?  Yea, about that…

Co-sponsored by the American Association of Clinical Endocrinologists and the American Thyroid Association, 2012’s “Clinical Practice Guidelines for Hypothyroidism in Adults” recommends the following course of action for pregnant women with elevated TPOAbs or Hashimoto’s:

When a woman with hypothyroidism becomes pregnant, the dosage of L-thyroxine should be increased as soon as possible to ensure that serum TSH is <2.5 mIU/L and that serum total T4 is in the normal reference range for pregnancy. Moreover, when a patient with a positive TPOAb test becomes pregnant, serum TSH should be measured as soon as possible and if >2.5 mIU/L, T4 treatment should be initiated. Serum TSH and total T4 measurements should be monitored every 4 weeks during the first half of pregnancy and at least once between 26 and 32 weeks gestation to ensure that the requirement for L-thyroxine has not changed. [Emphasis mine]

When I started this cycle, my thyroid was well controlled on my usual Synthroid dose.  On 9/18 my TSH was a beautiful 0.49.  My redraw on Wednesday?  5.69?!?!?!

On Thursday morning, I wrote my endocrinologist asking what to do.  On Thursday afternoon they left a message on my work voice mail (good thing I skipped work given my hysterical I’m gonna miscarry again crying fit, right?) saying they couldn’t go on what I told them, but needed to have my RE fax lab results to them.  My RE closes at noon on Thursday.  Last night at midnight I wrote a hysterical email to my RE’s nurse basically saying, “Why isn’t anyone paying attention to me?  Why won’t you help me?” (Yes, it was about that eloquent.)  This morning she wrote back saying calm down, we’ve faxed your results.  Later this morning a message arrived from my endo’s nurse saying, “We don’t treat pregnant patients, you will need to talk to your OB.  Who are you seeing?”  I wrote back with the same damn, “I don’t have an OB and I don’t plan on having one!” I gave my RE’s nurse on Wednesday.  And, that was that.

So, basically, by 2 this afternoon, I was left with the following:

  • RE won’t treat my thyroid since I have a thyroid-specializing endocrinologist.
  • Endocrinologist won’t treat my thyroid because I’m pregnant and that’s an OBs job.
  • OB won’t treat my thyroid because, well, I don’t have one.  But, even if I did, my experience has been that OBs won’t see patients this early anyway, so what good would it even do to have one?
  • Oh, and my rural PCP (who isn’t even in the office on Fridays) thinks any TSH under 10 is hunky dory.

Whee!!!

I escaped home from work and started making phone calls again, desperate to get some sense of resolution before the weekend (my 30th birthday weekend!) began.  It went something like this:

  1. Accept I must call a fucking OB at all of 4w4d pregnant.  Hyperventilate.  Explain situation.  Sound like a crazed woman.  God bless the patient receptionist who listened and cared.  Unfortunately, listening and caring doesn’t solve the fact that I’m not their patient, they’ve never seen me before, they don’t have my blood work, and it’s far too early to book an OB appointment with them.  She encouraged me to push my endo a little harder, but, after I told her I was seeing the thyroid center attached to the same teaching hospital their practice is attached to, she acknowledged they tend to not want to treat pregnant women for fear of liability.  Good thing I haven’t had about 5 conversations with my thyroid doc in the past 18 months saying I was specifically there so that they’d manage my care through pregnancy, eh?  Anyway, sweetheart scheduled me in as a new GYN patient (NOT an OB patient) for next Thursday.  Yes, the same day as my ultrasound.  But, at least since it’s a GYN appointment I won’t have to cancel it if I find out that morning I’m miscarrying, right?  Always looking on the fucking bright side.  That’s me alright!
  2. Try and call endo and get an answer that isn’t simply “Talk to your OB.”  Dial.  Press 0 to speak to a member of the staff.   Silence.  Dial back, press 0, silence.  Dial back, press 1 “if you’re a physician or a physician’s representative” (what the fuck do I care at this point?), receive error message that the extension is not available so try another extension.  Cry.  Give up.
  3. Call RE’s nursing line.  Get “Why don’t you have an OB?” heartless bitch nurse on the line.  Simply ask for the slightly less bitchy nurse I sent my emotional breakdown of a portal message to last night to call me back when she has a chance.  Hang up.  Cry.
  4. 30 seconds later, slightly less bitchy nurse returns my call.  She says, “Honey how are you?”  I cry.  And, then cry some more.  She orders me a prescription for 150mcg to replace my 112mcg of Synthroid.  She assures me there is nothing I can do (or that they are really willing to do) between now and next Thursday.  She tells me to always feel comfortable asking for her directly.  As I whimper out a, “Sorry I’m being so unhinged and irrational,” she responds back, “Honey, you have every reason to be irrational right now.  You’ve been burned enough times before and you won’t feel alright until you are holding this baby.  What else can I do to help make this better?”  I just start sobbing even harder.
  5. I call and set up an appointment with an infertility counselor.  Yea, you guessed it, it’s scheduled for next Thursday…
  6. Endo calls back.  He’s ordered a prescription for 137mcg and apologizes for the inconvenience.  He just, “Doesn’t like the confusion of handling pregnant women since usually OBs want to make those calls.”

So, I’ve gone from self-medicating by cutting my pills in half, to shortly having an arsenal of Synthroid prescriptions in different doses in my bedside table.  Not quite sure what the pharmacy is going to make of me, but that’s a call I’ll make for another day.  I can’t handle more phone battles right now.

But, let’s look on the fucking bright side, right:

  • I theoretically have an OB/GYN again for the first time in a while.  (Talk to me about whether this is a bright side when I have to face sitting in that waiting room again on Thursday.)
  • I will shortly have a full party array of Synthroid in all it’s beautiful colors.
  • My RE’s nurse has once again underlined that gold star next to my name denoting, “This chick is batshit crazy, handle with care!”
  • I managed to stop thinking about miscarrying for nearly an entire day since my focus instead was directed toward my thyroid.
  • It’s Friday.
  • I always wanted to have kids by 30, so at least I’ll be able to say I was technically pregnant on my 30th birthday this Sunday.  Close enough, right?

Not quite the Incredible Hulk

So, I started my ‘roids yesterday morning.  After three unexplained miscarriages, a whole host of autoimmune diagnoses (Hashimoto’s, endometriosis, Raynaud’s) and suspected diagnoses (Lupus? Rheumatoid Arthritis?), a full battery of immune testing, and a visit to the reproductive immunologist, it was decided that a low daily dose of steroids might be beneficial during this IVF.  The theory goes that, by quieting my haywire, over-active immune system, we might actually be able to trick my body into holding on to a pregnancy for once.  So, bottoms up.

I’ve heard of others having difficulty sleeping as a result of steroid use, so I asked my clinic if it would be wise to take them in the morning.  They agreed with that plan, so that’s what I’ve done.  I’m laughing at that now, of course, as I initially started this post last night and promptly fell asleep at around 9:30 before getting the chance to finish it.  Insomnia my ass.

I also did my first go-round of injections last night.  225 Gonal, 75 Menopur, and 5 units Lupron.  Other than a little bit of a learning curve with mixing the Menopur (how genius are Q-caps, by the way; why don’t we get them with HCG?), all went smoothly.  It dawned on me then and there, however, how dang much Gonal I’m using this time around.  My first injectables cycle I only used one 900 Gonal pen for the entire cycle.  This time?  I’m going to kill a 900 pen before I even go in for my first monitoring appointment on Monday.  Sheesh!  (And, I totally don’t even have any right to complain seeing as I’m actually a pretty good responder… or at least we think I will be?)

I think it’s pure coincidence, but I’m already crediting my ‘roids for some super human healing powers.  I totally screwed up my knee at my fitness class on Wednesday (see people, this is what happens when you exercise! Much safer on my sofa…).  Yesterday I was hobbling around like an awkward fawn, and moving my heating pad with me to each new desk I had to sit at.  (Luckily, my colleagues are used to my “quirks.”)  Today?  Yea, still a teensy bit sore, but honestly much, much better.  Sure, it was probably just a pulled muscle that corrected itself as pulled muscles are prone to do, but I’m gonna believe it was the healing elixir of my new little pill, the baseballer’s best friend.  Cause, you know, I’m hardcore like that.

I’m glad the knee is on the mend as well because we are headed out of town tonight to make the drive down to the in-laws.  Mr. But IF’s home town agricultural fair is happening, so we’ve got a long day of wandering around looking at barnyard creatures and eating fried things to attend to.  It’s funny how our pre-marriage negotiations went.

Me: “I want kids.  At least 2.  When we’re young.”

Him: “Sure.  No matter where we live, though, I want to get back to the Fair at least every other year.  K?”

Me: “Yea, why not.  I’m sure the kids will love it!”

Well, at least one of us is winning at life, eh?

So, to summarize, drugs flowing, knee mending, fair going.  Happy Friday!

I’m risky business

So, I almost lost bowel control in my endocrinologist’s office last Thursday.  After honestly venting my frustration with how poorly I felt my visit to the rheumatologist was handled last spring, my endo displayed sympathy and a dry wit I hadn’t really realized was there before.

I’ve had a grand total of one visit with this PA since moving north (my initial consult was with the actual MD and left me feeling lackluster and sad that I’d left some excellent quality of care behind in Delaware).  That one visit was good but less-than informative.  He listened without criticism when I complained of back pain and skin rashes (those same recurring ailments that have driven me to various doctors for years), and he even agreed to followup on them with some bloodwork.  That bloodwork found an unusually high titer of ANA which triggered the referral out to rheumatology (and commenced the giant wastage of timeage that was that adventure).  So, yea, when viewed through the usual lens I apply to my physicians (“Did he insult me?” “Did she say something I know to be outright medically untrue?” “Did they send me home with a sterile collection jar and say good luck?”), he was pretty amazing.

But, back to the shitting a brick mid-checkup.  After recounting my time with rheumatology he responded, “That’s so frustrating, isn’t it?  Rheumatologists, man, sometimes I don’t even know what language they are speaking!”

(My eyes began bugging out of my head here.)

So then, he turned from the computer, looked me straight in the eyes, and asked:

What resources have you been able to find to tell you more about your conditions and explain why this has all been so difficult to diagnose and pinpoint?

Breath taken away.  As was my ability to speak, form coherent sentences, and (nearly) keep my shit in place.

You see, I’ve practically made doctor’s-appointment-going a full time job for the past 4 years.  Never once has a doctor asked if I was educating myself.  Never once have I been told of the importance of doing my own homework.  Never once have I not been laughed at for admitting that I’d done tons of reading and research on my conditions.  It seems I now have to amend all those sentences.

This man actually wants me to be proactive, stay informed, and engage in a conversation with him as we work through my medical issues.  As I engaged in my usual dismissive answering behavior (“Yes, I did have that rash, but it went away.  I don’t think it is tied to the seasons, but I guess I don’t know, it could be…”), he actually scolded me a teensy bit.  “No,” he said, “these autoimmune conditions can be funky.  Would you believe I get a flare-up of Raynaud’s every three years like clockwork?  Never any other time, just every three years.  I know countless doctors who would laugh me out of their offices, but I’ve lived it so I know it can happen.  Just keep an eye on those rashes, ok?”

Bestill my beating heart.  I think I’m about to dump Mr. But IF for this 6’4″ older male doctor.

When we got to talking about my future plans – the IVFs, the possibility of more pregnancies, my desire to have his office on my side in those early days of pregnancy when my thyroid is so very prone to wreaking havoc – he offered me more advice.

“You’ll be seeing a perinatologist, right?”

I stared blankly for a while before I managed a, “I’ve always been told I’m not a potential high risk pregnancy.  Is that wrong?”

“Yes,” he answered, “I think you’ve been through more than enough.  I want to make sure you get all the monitoring you think you need.  If you have any trouble, give us a call.”

Now, maybe its odd to be so thoroughly thrilled to be informed I’m “high risk” before I even manage to conceive, but I left happy.  Someone’s taking me seriously for once, and I’m holding firm to that.  (And, let’s face it, after 4 years and 3 miscarriages I’ll gladly take all the extra monitoring they can throw at me if I ever manage to get and stay pregnant again.)