I’m off to see the endo

Can we all just take a deep breath and celebrate the fact that I’ve managed to get it up to post three days in a row?  Huzzah!

I have my regular 6-month check up with my endocrinologist this afternoon.  I’m feeling odd about it.  For the first time in the 3.5 years since my Hashimoto’s diagnosis I’m walking into an endo appointment without a list of questions nine miles long.  Part of me wants to celebrate the fact that that clearly must mean things are finally as they should be and that managing my thyroid disease has become that mythical “not a big deal” all my now-fired doctors once promised.  Thing is, though, that’s not the cause.  The cause is primarily that I’ve gotten so good at managing my own care by now that I really only need the doc to write my scripts these days.  And, of course, there’s the fact that I’ve already had my “I’m-on-the-brink-of-starting-IVF-please-help-me-manage-my-thyroid-through-it” appointment.  It was over a year ago, two doctors ago, and 300 miles away.  Ah, memories.  Nothing like repeatedly gearing up for a whole lot of going nowhere over, and over, and over again!

The one thing I am certain of is there is no way I’m getting delayed.  The fallout from my last endo check was tremendous.  It was this practice that first noted my elevated ANAs last winter, and insisted on my having a thorough going over by a rheumatologist before returning to treatment.  Good right?  Not really.  The earliest this practice would get me in with their sister rheumatology group was 3 months away.  I found another clinic that would only make me wait 5 weeks.  I went seeking answers, and left with a “who the hell knows?”  We’re not doing that again.  I don’t care what they find, we’re sure as hell moving forward this time.

Well, it’s about that time.  An hour up to the doctor, surely an hour wait (they are always insanely over-booked), a 10-minute visit, and then an hour drive home.  The glamour of my life I tell you!

Fatty acids on board

This morning I returned to the RE for my first Intralipid infusion.  It was my first time at the RE since I triggered ovulation, and my first experience with Intralipids (ILs).  Despite a morning of firsts, it was a pretty boring event.

IV drip stand and bag with intralipids

My vein milkshake

I’ve been aware of ILs for a while now, but up to now have always had doctors who strongly poo-pooed both ILs and the entire world of immunological infertility and miscarriage.  Back in my young, naive, spry days I remember asking RE#1 about immune implantation failure and ILs or IVIG and his immediate response was, “Get off the Internet!”  My inner self replied, “As soon as you get your head out of your ass,” but I smiled, thanked him for his time (why do I do this when all I can think is what a waste of my time such visits are), and went home to bitch to my friends in the computer.  So, though RE#2 is by no means my favorite person in the world and he often makes me miss RE#1, I was happy to discover when pursuing his website before making our move that he did at least do some therapies aimed at the immune system.  Granted, he does no immune testing, his NPs and nurses no less about the therapies than I do, and he blindly moves all repeat loss patients (RPL) to his cookie cutter RPL protocol (Lovenox, Baby Aspirin, ILs) without a thought toward their history or medical background, but even when motives aren’t quite pure, the results can still be positive.  And, I’m feeling positive now that my own Intralipids are on board.

Intralipid is a brand name for a type of fat emulsion.  Basically, the “medicine” is comprised of soybean oil, egg yolk phospholipids, glycerin, and water, and is administered via an IV drip.  The substance was initially created to help nourish adults and infants who are unable to get sufficient nutrients.  At about 2,000 calories per infusion (ack!) that makes perfect sense.

Somewhere along the way, however, it was postulated that ILs could also correct immunologic dysfunction in the uteri (yes, hah, that’s the plural) of women experiencing infertility, repeat miscarriage, or repeat IVF failure with normal-appearing embryos.  As Dr. Braverman explains, “Intralipids have a suppressive action on certain components of the mother’s immune system, essentially safeguarding the embryo from the immune reactions which might otherwise result in a miscarriage.”  As the lucky recipient of two autoimmune diagnoses (Hashi’s and Raynaud’s), the sufferer of three miscarriages (including one 9 week loss of a normal-looking, strong heart beating almost fetus), and the owner of a set of crazy and yet undiagnosed autoimmune lab results, I’ve decided it’s time to throw everything there is at this trying to conceive shit and see what works.  I believe in my heart something immunological is happening to cause my abnormally low progesterone and HCG and to interrupt my pregnancies.  We know my immune system is already fucked by i’s propensity to attack itself, so why is it so strange to think it’s also attacking babies?  I’m loudly shaking my head along to Dr. Sher who writes, “In my opinion, it is very regrettable and unfortunate that so many patients are denied the ability to go from ‘infertility to family’ simply because (for whatever reason) so many reproductive specialists refuse to address the role of immunologic factors in the genesis of intractable reproductive dysfunction.”  Preach it Dr. S!  So even though medical researchers are still spouting the same, “appropriately controlled, large-scale, confirmatory studies are necessary,” hurry up and wait, I had 2,000 calories of egg yolk and soybean oil injected straight into my vein this morning.  Breakfast of champions indeed!

Now, normally ILs would be given a few days prior to ovulation, a few days after, and then again sometime in early pregnancy.  This is what I wanted, this is what we planned, this is the proper way of things.  But, when we mapped out this entire cycle back in March Intralipids were on a nation-wide back-order at every specialty pharmacy currently covered by my insurance.  I frantically messaged my NP through our patient portal, told her I couldn’t get the Intralipids, and asked what to do.  She replied with a simple, “Oh, yea, they’ve been backordered for a while now.  We’ll make do without them.”  I’m glad she was so fucking calm, because I most certainly wasn’t.  Then my high ANA was discovered and I was left hanging in the breeze, unable to try and conceive, stuffed full of birth control pills again, and waiting for the world’s most unhelpful doctor visit to pass me by in mid-May.  When this cycle started we reviewed the meds I had in my possession (those gathered for the March cycle that never happened), I got poked, I got probed, and the rest was history.

At my final follicle check before I triggered I had the “good” NP (and not the “chipper” NP, the “grumpy” NP, or the “clueless” NP I’d had for prior scans that cycle) and she dutifully asked me to review my history and the plan for the cycle.  I explained it all and she asked why we weren’t doing ILs.  I told her I’d tried in March but was told it was hopeless and there were none to be had.  She informed me that they had a new supplier and that I really should be doing them.  I agreed immediately.  She wanted to book me the next day (the day of my trigger) for my first infusion.  And here’s the hiccup.  First, the meds had to somehow be ordered, approved by insurance, paid for, and shipped across two states in under 24 hours.  Doable (I’ve done it with PIO before), but not exactly stress-free.  Second, and the bigger deal, I would need to take an entire morning off work with only a few hours notice.  With an hour drive each way to the doctor, and two hours spent in the chair receiving the drip, that’s at least a 4.5 hour absence.  I have freedom to take time as I need and my boss has been quite supportive, but I just couldn’t do it.  So, I didn’t get my pre-O dose in.  I’m not incredibly concerned about it, but I am annoyed by how it happened.  Between my baseline and my final scan I had 5 appointments with the RE to discuss my protocol, yet only at the last was this question (a question I would have never thought to ask myself) raised.  Once again, my treatment is being dictated by bad timing.  Next thing you know I’ll have the gall to miscarry again on a weekend!

The infusion itself was, I don’t know, what’s the word?  OK?  Fun?  Not terrible?  Oddly relaxing?  Honestly, it was probably my best trip to the RE because 1. no talked to me much, and 2. I didn’t have to take my pants off.  (Yes, the things that make for a very bad night on the town, make for a very good visit to the RE.)  It’s strange the things I worry about in advance of my appointments.  Last night I wasn’t remotely concerned about the infusion itself – the needles, the drip, the visual, the waiting.  What I was concerned about was what they were going to do with me, where they were going to set me, what my surroundings would be like.  I’ve complained before about my ski chalet fertility spa clinic, and this is perhaps a topic I should expand upon a little more in future weeks, but long story short, I hate feeling like I’m being pandered to, like my medical condition is being minimized, like only aggressive femininity is catered to by my fertility boutique.  The Bose speakers blasting tranquil bird and water sounds, the Keurig in the lobby, the overstuffed furnishings and fireplaces, and the spa out back do the exact opposite of relax me; they enrage me.  So, my biggest fear with the Intralipids was that they would set me in some dimly lit cave of tranquility while administering them and that the entire time I’d be getting increasingly annoyed that my fate had come to this.  Me, the gal who hates getting her hair done at a salon, the woman who’d prefer a beer and football to wine and a chick flick, left to fester in a doctor’s office most convincingly camouflaged as a day spa.  Talk about the awful things IF has done to me!

Typing with IV drip

I should definitely get overtime for this!

To my great pleasure, however, I was whisked away to a bright and sterile procedure room, instructed to sit in an exam chair that reclined to a lounge position, given a warm surgical blanket, and asked to review my history and sign several consents.  Once the IV was in I was handed the water bottle and laptop I’d smartly brought from home and more or less left to my own devices for the next 2 hours.  I got a little work done, worked on the questions I’ll be asking when Mr. But IF and I host our village’s weekly trivia night on Wednesday, and before I knew it time was up.  It would have been perfect save dealing with the pulseox monitor they required me to keep on my finger, which greatly inhibited my typing.  (I was hoping to post this from my chair this morning!)

Now we wait.  My first pregnancy blood test is a week from Monday.  Hopefully the milkshake my veins just drank in does some good, and even if it doesn’t my morning alone with my laptop and thoughts certainly did.

Consumer-driven health care

First of all, I’m sorry I left you all hanging.  Grand build-up to the rheumy visit Monday, complete radio silence Tuesday.  Despite the fact that I’m now freaking the fuck out that ya’ll are going to think I’m some Munchhausen by Internet wackjob (thanks for planting that seed Jenny and Rachel), my silence wasn’t exactly a plea for help.  I just got really busy with a work retreat yesterday.  That said, the texts, tweets, and emails were immensely appreciated (you all know who you are!).

So, the rheumy was a total waste of time.  I don’t know why I expected any different.  I’ve been in this game long enough that I should know better by now.  Our healthcare system is broken, and it’s dysfunction is slowly breaking me.

In the spirit of my normal Wednesday bullet list, let’s review some dates:

  • February 18: Completion of third miscarriage.
  • March 18: First abnormal test result that prompts referral to rheumatology and cancels our future cycles.
  • June 22: The first appointment time I was offered by the rheumatology practice affiliated with the urban hospital network connected to my endocrinologist’s practice.
  • April 23: Day I managed to snag an initial consult with a different rheumatologist (after calling around to all rheumatologists within an hour AND crying to multiple schedulers about my poor infertile self).
  • May 1: Blood work drawn.
  • May 6: MRI performed.
  • May 7: Follow-up appointment canceled because doctor’s out sick.
  • May 13: Follow-up finally happens.

So, it’s been 3 very shitty months of waiting and wondering.  Months of fretting that my symptoms would go away, that my lab results would normalize, before I could in to see the doctor.  Months of documenting every tick, every ache, every skim blemish.  Yet more months of longing to be a mother, living another Mother’s Day, allowing my endometriosis to grow, as I wait for a time convenient for my medical practitioners.  At least, I hoped, it would be worth it.

It wasn’t worth it.

Two lab results came back as abnormal.  In March the ANA speckled pattern was 1:1250 (normal is less than 1:80).  Last week ANA homogeneous pattern came back at 1:320 (same normal range).  My C-reactive protein – a marker of inflammation and/or infection – is also elevated.  So, results, right?  Not really.

The rheumatologist’s ultimate verdict was that I may be developing lupus, rheumatoid arthritis, and/or fibromyalgia, but that I didn’t yet meet the full diagnostic criteria for any of those conditions.  She offered me Plaquenil, warned me of the myriad of possible side effects and many months it would take to work (if it worked at all), and I declined the prescription.  She was 45 minutes late to the room, and spoke to me for 3.  She ushered me out the door with a nonchalant, “Come back when you can no longer function.”  Wait, what?  When I can no longer function?  (Surely you meant if, no?)  WTF?

I’m learning that the good thing about living in the middle of nowhere and having to drive mile upon mile to get to utterly mediocre doctors is that the drive provides ample post-appointment cry time.  I wailed like a banshee, I pulled back to whimpers, and, as I rounded the corner into our village, I had just a few sniffles left.  I walked in the door quietly composed, prepared for Mr. But IF’s flurry of curse words and promises of bodily harm to all doctors.  It’s a performance I know well, this drive home in tears, greeted by hubby’s shouts, sinking into a tub of ice cream and sci-fi TV routine.

So, I have one more date to add on the list.  May 23.  That is the day my period should arrive, and the day we return to the RE.  That day is my silver lining.  I’m trying not to focus on the fact that it should have been March 23 and not May 23, but most of the time I fail.  Come May 23 things should change around here as this blog transforms from one of an infertile-in-waiting to an infertile-injecting.  It’s about damn time.

Mother’s Day Rage(r)

I (kinda) survived another Mother’s Day.  It was our fourth go-round, so I suppose that helped.

In 2010, we’d only been trying a few months so I wasn’t remotely startled that I wasn’t pregnant yet.  Surely, next Mother’s Day I’d be celebrating with our new bundle of joy.  How exciting!

2011 was much the same as 2010.  I’d gotten my thyroid and PCOS diagnoses a few months before Mother’s Day so was 100% confident that, with diagnoses in hand, 2012 would be my year.

2012 was my year alright, but a year of grief not gladness.  We’d lost our first pregnancy in November 2011, and our second on May 5.  Mother’s Day 2012 was the first I celebrated as an almost-mother.  The one during which I mourned my dead children alongside my own dead mother for the first time.

This year?  Well, this year I woke up having burnt myself with the heating pad I slept on to keep the awful leg pain at bay.  This year I laid on the couch, watched endless sci-fi television with the hubs, and wallowed in my own 6-days-without a shower filth.  This year I managed.  On Mother’s Day, that is.  The days before and after, however, were/are a slightly different story.

Mother’s Day Eve

On Saturday we threw a party.  The semester has ended and the number of friends and colleagues we have with May birthdays is staggering.  So, when a friend mentioned his desire to throw a party and his concern over his tiny 1 bedroom apartment, we offered up our great Victorian with newly purchased patio furniture and 1 remaining powder room.  I have to admit I was pleased with the timing.  A weekend spent planning for and enjoying our first large party in the new house would surely go a long way toward easing some of the pain of my dual motherless-ness.

And, it was true… for a while.  Our house proved to be a brilliant party space, our friends (and even friends of friends) came out in droves, the food was delicious, and the alcohol was free-flowing.  Then it started getting later and started getting louder.  And I started getting nauseously concerned.

You see, I’m always the one that begs Mr. But IF to turn down the TV, to turn down the music, to stop talking so loud, out of the fear of annoying the neighbors.  I can’t say exactly why it is that I get so totally overwhelmed when I think we are doing something that in some universe could possibly insult some person, but I know being the adult child of an alcoholic plays a very large role.  I still remember the moment when I realized that my quirks, my foibles, my very sense of what it means to be me were in their entirety the list of characteristics of children of alcoholics.  I was doing research in my undergraduate university archives, looking through issue after issue of student newspapers from the mid-1980s, when I saw a giant inset box on page 10 of the newspaper that listed characteristics I knew intimately.  “Are you a perfectionist?” the paper asked.  “Do you try to predict the words and feelings of others?”  “Do you lie when it would be just as easy to tell the truth?”  “Do you constantly feel like you are playing at being normal?”  As I followed the instructions at the bottom of the ad and turned the page I wondered what I would find.  Would I find an application for MENSA?  Would someone tell me what a good student I was being?  Would I be invited to the campus’ 1980s over-achievers’ club?  None of the above.  That was the day that I learned that my sense of self was intimately connected to my existence as the child of an alcoholic.  When I turned the page I was offered support at the nearby Al-Anon family group.

It’s a strange thing to realize that so much of your self is tied to childhood events outside your control.  I don’t want to feel constrained in my life choices, to feel like I MUST behave a certain way because it’s what my own fucked up brand of nurture predisposed me to, but it is pretty damn helpful to have an awareness that many of my actions, including most of those that are so confusing to Mr. But IF, do have a root deep down somewhere that I need to respect in order to move beyond.  In other words, only by embracing my crazy can I ever hope to walk away from it.

But, I was not nearly that composed and rational when my next-door neighbor finally walked over in his pajamas at 12:30AM and asked us to quiet down.  I had been hiding in the kitchen since midnight fearing exactly this scenario.  If I was found washing dishes instead of partying by the fire pit would my neighbor have more mercy?  Would I be found less accountable?  Would my daddy issues psyche stay quiet?  The moment I went outside to shut the back gate and ask for the party to move inside my neighbor found me.  I felt immediately scolded and ashamed.  As strange as it seems, I’m still not completely over it.

There’s another element here too.  The neighbor pleading quiet has a gorgeous 2 year-old boy and I suspect he and his wife have another on the way.  After years of IF I have finely tuned pregnancy-dar and can tell the difference between a belly bulged by too much pasta and too much sex.  I wasn’t having fun at our all-night rager.  By 11 I honestly wanted my bed.  I feel grateful to have friends in this new town and I feel thankful our party was so well-attended, but, if I’m being completely honest with myself, I would have rather had a Sunday afternoon family picnic than a beer-fueled all-nighter.  It all comes down to this: I had a vision of what my life would look like at this point in time.  That vision included toddlers running awkwardly through the grass and our parent friends watching on holding their slices of birthday cake and a rare celebratory drink.  It involved me making fun party snacks and cleaning up after dirty little hands.  Instead, I watched adults cuss and smoke by a fire, I made mixed drinks, and I cleaned up beer spills.  I want to be Donna Reed, but instead I’m feeling trapped in Animal House.  I want to be the cranky neighbor asking for peace and quiet, not the one making the racket.

Post Mother’s Day

As I wrote, I survived another Mother’s Day.  It was actually one of the easier ones.  But, maybe it’s because it’s been book-ended by such despondence?

Today has been difficult.  I’m still feeling embarrassed about our party.  I’m feeling guilty that I allowed myself to totally zone out yesterday and, in the process, ignored the one woman in my life – my mother-in-law – who still deserves my wishes of a Happy Mother’s Day.  I’m feeling gutted by an unexpected Facebook pregnancy announcement.  And, I’m feeling incredibly on edge as I wait for my rescheduled rheumatologist appointment later this evening.

DILAnother thing happened the day before Mother’s Day that tugged at my heart.  My mother-in-law posted the following to my Facebook wall as a caption to the photo on the right:

As Mother’s Day approaches, it really comes home to me what awesome children we have and how blessed we are to have them! When I read this, I realized that it sums up how special you are to both [father-in-law] & me. We love you!

My mother-in-law is a women of few words, but I’ve been around long enough that I’ve learned to read through those words and assess all the hidden meanings.  This women gets it – she gets all of it – and for that I’m eternally grateful.  She doesn’t try to replace my mother, but she acknowledges my loss and strives to add a little something back when and if she can.  While she hasn’t experienced infertility, she did lose a pregnancy between my husband and his sister.  Again, she doesn’t equate that experience with our own struggles – she’s acknowledged that as hard as her miscarriage was it was made easier by the fact that she could hug her son to bed at night – but she does use that experience as a guide into our world.  I have an amazing mother-in-law, but I can’t find it in myself to celebrate her on Mother’s Day.  It’s just too difficult.

While my mother-in-law tries to understand, it constantly feels like others around us make ignorance their mission.  When I first “came out” about my infertility on Facebook, a number of casual acquaintances sent private messages my way opening up about their own struggles, their own miscarriages, their own diagnoses.  A college acquaintance thanked me for my bravery and honesty and informed me that her husband and her had been “trying for a while” with no success.  I found out through Facebook that her baby boy was delivered healthy and happy this winter.  My best friend’s college roommate opened up to me about the “anatomical abnormality” she had that would make it nearly impossible for her to carry a child.  I encouraged her to contact me any time she needed.  I found out through Facebook that her baby shower was a roaring success and that her belly was enormous.  My mother’s best friend hugged me through tears as she told me about her son and daughter-in-law’s infertility and recent miscarriage.  I sent her information about their local RESOLVE support group, I told her to pass on my contact information to her daughter-in-law, and I ached for them.  Today, the gender reveal cupcake photo posted to Facebook told me that their little boy is due on September 29 – a week after our due date for miscarriage #3.  Last one standing is starting to feel like an understatement.

Finally, I’m so very fucking anxious for my rheumatologist appointment tonight.  For what feels like the millionth time in the past 3.5 years I find myself viewing my infertility through a worrying lens of chronic health issues.  As I’ve said before, all I wanted was to be a mother, but in turn all I’ve birthed are lifelong health complaints.  Since Wednesday I’ve been grappling with the knowledge that my blood work was not all normal.  That little bit of information combined with recurrent knee and elbow pain has me more than a little bit frightened.  Having a family medical history that would provide more than enough drama for any daytime soap, I’ve morbidly joked about my own mortality since I was far too young.  But, here I sit on the precipice of 30, seriously wondering what the future will look like.  In the past months I’ve finally begun coming to terms with the possibility that that future will not include children, but as that revelation has been happening I’ve started having new worries.  Will I be in pain for the rest of my life?  How much pain?  Will I know what’s causing it?  Will Mr. But IF live life both without children and without a fully functioning wife?  Will he… have me?  I can’t believe I’m thinking these questions, let alone writing them down for all to see.  I’m fine.  I’m living, I’m working, I’m partying, I’m laughing.  I’m maybe a little sore, a little tired, a little weary, but I’m fine.  But, what will I be next year, in five years, in twenty?  I hate that my mind is making me go there.  I’m not even 30.

So, yea, I survived Mother’s Day.  It’s just the rest of the days I’m worried about now.

It’s been a week, alright

It’s been a strange week.  A stinky week and a beautiful week.  It’s been a week.

Monday: I took my last shower on Monday.  Our lovely old house is now sans-full bath as the renovations have begun.  Luckily, we still have a powder room with the essentials (toilet and sink), but for the bigger cleanliness rituals we’re looking to the kitchen sink and the local gym.  It’s been fun!  (And stinky.)

Tuesday: Oh, Lord, Tuesday.  I’ve already written about Tuesday.  Tuesday kinda sucked.

Tuesday didn’t totally suck because I got to see my RESOLVE girlies at our regular monthly support group meeting.  We welcomed three new folks to the group, which always elicits part joy and part sadness, and I fielded a question about whether or not we’d had any recent “successes.”  That one stung.  I didn’t know the answer and feared the worst as some usually chatty gals that I knew were in active treatment had fallen very silent as of late.  I responded to the group that I was quietly hopeful I’d have news to share soon, but left with a somewhat heavy heart.

Wednesday: Wednesday was Advocacy Day!  And, as if to reiterate why exactly it was I couldn’t leave work and travel to D. C. in the midst of finals week, work was insanely busy.  I managed to squeak out a few letters to my senators and representative, caught up on my Twitter stream through the early evening, and drank myself silly at trivia that night.  That infectious combo of advocacy day-fueled inspiration and trivia night-fueled intoxication went a long way toward easing some of the pain of Tuesday’s disappointments.

Wednesday wasn’t all hope and beer rainbows, however, because I’m a total nut-job heavily motivated, assertive, and informed patient.  After my rheumatologist appointment was canceled on Tuesday I made it all the way to Wednesday afternoon before I called back and demanded they tell me something.  I seriously should know better than to hope a medical receptionist would be helpful by now.  I did badger convince her to release the very basics of my lab results to me.  See, thing is, I was fairly certain the receptionist would say, “Yup, everything is marked as normal.  Have a nice life!”  And, while I have a paranoid healthy respect for the fact that “normal” labs are not, in fact, always normal (see: Hashimoto’s Manifesto), I was happy enough to have the receptionist tell me “normal,” walk away knowing I’d most certainly be cycling again at the end of this month, and leave my crazy informed followup questions for the rescheduled rheumy appointment on Monday.

Thing is, I knew from the moment the receptionist’s “Umms” started that not everything was “normal.”  She finally regained enough composure to helpfully say, “I don’t know about this rheumatology stuff.  Oh my I can’t even pronounce any of these!” <dagger, stabby, dagger>  I asked her specifically about ANA speckled (the previously elevated value that landed me at the rheumy in the first place) and she said “I see an ANA, but there is nothing about speckled.  ANA homogenous is in red, though.  It says 1:320.”  So, great, another unexplained elevated ANA (normal, btw, is 1:80), and a missing lab value I most definitely need.  Someone fell down on the job.  I’m guessing my totally incompetent rural hospital lab failed to order all the tests requested.  Highly likely given the fact that the phlebotomist – you know, the one that offered to be my surrogate in February when I was in there every other week due to my failing pregnancy – said to me, “Wow, I don’t know any of these tests!” when I went in last week for the draw.  I watched as she kept plugging random combinations of words into her computer terminal in a desperate hope of finding the right tests, and was fairly certain at the time that she just gave up and skipped a few.  Of course, when one is holding back tears forged from the rage of repeated medical incompetency, it’s hard to correct the perky phlebotomist.  Now, the other option is that the test was actually performed and reported but the receptionist can’t read.  Honestly, that’s a highly likely scenario there, too. <stabby, dagger, stabby>

Finally, the receptionist said, “I’m not going to try to pronounce any of the rest of these, but I will say only one other is flagged as abnormal.  I’m not allowed to give you the value, but this thing called ‘C Reactive Protein’ is high.  You’ll have to ask the doctor about that one.”  Hello, heart, welcome to my stomach.  Seriously, not ANOTHER thing!?  So, here I sit knowing I’m most certainly not “normal” (shush up Mr. But IF), but not knowing whether these values mean much of anything.  All I’ve been able to dig up on C-reactive protein is that it is a sign of inflammation or infection and, supposedly, predisposes one to heart disease.  Fuck the heart thing, my whole grandparent generation died of strokes and heart attacks in their 50s so I’ve known for a long time I’ll be in the ground looong before Mr. But IF, so whatevs.  I just want to know if I’ll be leaving grieving young children behind or not dammit!  What does this mean for infertility and miscarriage?  So far Drs. Google, Twitter, FF, Facebook, and, unfortunately, Braverman, have left me hanging.  Anyone?

Thursday: Thursday was pure beauty.  You know that unusually quiet RESOLVE gal I mentioned?  Yea, IVF#1 success!  And, an early member of the group who wrote late last year to say she’d be pursuing adoption?  Baby boy home safe and sound and in his loving parent’s arms!  And, for good measure, another member I’d lost track of that had been informed by her RE that her options were donor egg or nothin’?  She’s disappeared of late because she is currently entering the second trimester after an own-egg IUI.  Combine all of that with the post-rain, puffy cloud, amber sunset we saw as we drove home from picking out our tile and light fixtures, and all I have to say is life is wondrous and beautiful.  (Seriously, I’m not crying, it’s, um, just these damn allergies!)

Friday: Well, Friday’s barely here, but there can’t be anything wrong with a Friday.  (Well, maybe day 5 sans-shower might dampen it a bit.)  Anyway, I’m planning on taking my inflamed/diseased/who-the-hell-knows self out on the town tonight.  This will likely involve some porch sitting with friends, growlers from the local micro-brewery, and live music from a great local band as the town collectively celebrates the college kids getting the fuck out the beginning of summer.

I’m going to stop my prognostication there.  I’ll save discussions of Sunday for Sunday.  Well, assuming the hangover is gone by then.

The verdict

So, the long-awaited rheumatologist appointment was yesterday afternoon.  5 weeks and half a dozen tearful pleas to get an earlier appointment, and guess what the verdict was?

I have been diagnosed with “a constellation of lupus-like symptoms, but definitely not outright lupus.”  Um, yay?  <scratches head>

I mean, don’t get me wrong, there is certainly nothing as awesome as hearing you don’t have a(nother) serious, life-impacting condition.  But, I’m so tired of the immediate next question in my head being, “So, what DO I have?”  Especially because, the answer is so regularly, “Well, I don’t really know.”

The next steps are to get additional blood work performed, as well as an MRI of my back.  Both the rheumy and myself expect that nothing unusual will turn up on either.  It’s more waiting while my insurance decides whether or not I’m permitted to actually get the MRI, but either way my followup with the rheumatologist is on May 7.  Less than 2 weeks away!  Assuming that nothing is uncovered on either the blood work or the MRI, the rheumatologist has given us her blessing to start trying to conceive again.

And, here’s my problem.  Like, my totally mind-fucking current obsession.  Have I gone off the deep end?  I’m having major quality of life issues, I’ve been building up the importance of this appointment in my head for over a month now, and I’ve fretted to everyone I know about how nervous I was for the visit.  Now that it’s over?  All I can feel is complete elation.  No, not because I don’t appear to have lupus, not because I actually liked and respected the doctor (though, that one was a shocker), and not because someone is investigating my complaints.  The only chorus that is echoing through my head is, “We can try again!  I can ditch the birth control!  I finally get to rip into that Gonal-F in the fridge!”

As I’ve started to explain the results of the appointment to friends and family over the past 24 hours, all immediately ask variants of the questions, “What can be done?,” “What’s causing the pain?,” and “Will she be able to help you?”  Honestly, I have absolutely no fucking clue.  I didn’t ask.  Only as I have started crafting replies to these questions have I realized how totally and completely I have lost my mind.  Me, the in-your-face, self-empowerment, take-charge-of-your-health, Hashi’s princess, I’m answering these real questions with squishy “I don’t knows” and other forms of cop outs.  I’ve marginalized my pain by stating that, since I’ve lived with this pain for so long now, continuing to live with it without a real cause will be no great challenge.  And, it’s true, on my good days I can visualize a future where I still have this pain and not be that troubled.  Half the battle with my pain is the constant wonder of what it means for the future.  If I know I don’t have lupus, the pain is infinitely more bearable.  Similarly, I’ve started parroting back the same unsatisfying answers to my friends and family that so many of my doctors use on me.  “Autoimmune issues/inflammatory conditions/non-specific pain are hard to diagnose and treat,” I say.  “You see, so much of the body is a complex network of interconnected pathways that its impossible to distinguish one syndrome/set of symptoms/AI disease from another,” I reply.  “Antibody testing is notoriously inconclusive,” I explain.  Unfortunately, I know enough to know that all the above are true, yet I’m dumb enough (and, apparently, beaten down enough) that I’ve given up caring about pushing any further.  It’s like I’ve developed infertility Stockholm syndrome.  I’ve been fighting the system – doctors, insurance providers, society – for so long, I have suddenly started to accept their orders as truth.  I deserve to be treated like this, I’m infertile.  I know you can’t give me answers and I’m sorry for being such a complicated case.  I understand that you don’t have time for me.

But, since everyone needs something to look forward to, I’ve silently and slowly refocused my battered brain.  You know the only thing I’m 100% fixated on right now?  We can start trying to have a baby again in 1 month’s time.

When we started trying to conceive in 2010 I stopped caffeine, I stopped alcohol, I watched what I ate, I was a perfect little stereotype.  Now, as I sit here with debilitating back pain and a whole host of unexplained medical complications, I’m all, “Knock me up doc!  Let’s get this show on the road!”  Time takes a terrible toll on one’s sanity.  I’m a cautious person, I over-analyze all that is in front of me, and I try to find a balance between doing what’s wise and doing what’s necessary.  In the last 6 months, that has ceased to be the case when it comes to my reproductive health.  If someone called me today and offered me a free IVF cycle with an unlicensed doctor operating out of the back of an RV I’d probably do it if there was even the slightest chance of my becoming a mother.  And, that’s terribly, terribly frightening.

Pain, pillars, ponder

I started this post this morning, but you won’t see that first draft.  It’s not relevant anymore.

For the past several days I’ve been brooding.  The pain that started flaring last month, the pain that led to my ANA test and subsequent referral to a rheumatologist, has started to hang around more often than I’d like.  It’s scaring me.  It’s hurting me.  And, it’s making me downright miserable to be around (sorry Mr. But IF!).  All-in-all I’ve spent the past week waffling between feeling sorry for myself, and being embarrassed of myself.  And, the sheer familiarity of those competing emotions, the fact that they send my mind straight back to the days before my Hashi’s diagnosis, frightens me more than words can say.  I don’t want to be someone living with chronic illnesses, always either waiting for the other shoe to drop or wondering if my pain is, in fact, as bad as I think it is.  But, when laying down to sleep evokes the fear of how badly you’ll ache when you wake, when the morning alarm is accompanied with an immediate sense of distress more often than it’s not, and when thoughts of the pain you feel occupy more and more of your time, it’s hard not to feel lost and alone.

I’m 29.  I have a painful rash on both hips.  I wake with back pain that brings tears.  I feel completely out of control of my emotions.  I spend large portions of my days on the phone with doctors, pharmacies, and insurers.  I’m 29.

When my Hashi’s was diagnosed and finally successfully treated I thought this was all behind me.  I convinced myself the pain had passed and I’d never get back there again.  When my laparoscopy last year relieved the last of my daily symptoms, I knew a new page had been turned.  My thirties were destined to be a time of good health and a time to make up for all that I lost of my twenties.  I spoke bravely about how the lessons I’d learned on this journey would arm me with the power and self-assertiveness I’d need to overcome future hurdles.  But, as the pain returns, I wonder – are those only emotions a healthy person can feel?  Had I developed a sense of amnesia about my painful past?  Did I try to rationalize it all by assigning some inherent worth to my struggles?  I have no idea.  All I do know, is that for the past two days I’ve felt everything but strong, assertive, driven, and empowered.  I’ve felt broken.  As if someone removed my new self from this body and returned to the surface the same scarred, hurting, insecure little girl that was there underneath all along.

This was, by and large, the post I wrote this morning.  Then, the world reminded me of its beauty and its cruelty.

I got a call three hours ago from a local floral shop.  I missed the call, but, upon listening to the message I heard that a delivery had been made to my house in my name.  I won’t get home from work until 10 this evening, so have no idea who they are from or what they are for, but I know they aren’t from Mr. But IF (I asked) and I know it’s not my birthday, my anniversary, my anything.  Someone sent me flowers to bring light to this suddenly dark world.  I can’t begin to express how appropriately timed that action was.  I am not alone.

I finished signing up for the Walk of Hope this weekend, and have already received two donations, and countless well wishes.  I am not alone.

Mr. But IF decided to call our insurer today to continue a battle that’s been waging since October about my consult with a new OB/GYN (like I’ll ever need one of those).  As I selfishly wrote to him, “Some days, I just want to quit the pills, quit the consults, quit the insurance battles, and do what the medical industry wants me to do and shut up, disappear, and die,” he was waging my battles.  I am not alone.

As I checked in with my IF friends on the computer, and told them of my recent hard times, they shouted words of support, encouragement, and, yes, even a few threats to my body and my doctors, from towns across the globe.  I am not alone.

When a college acquaintance, now years in to battling her own chronic and debilitating illnesses, offered me words of wisdom and support despite the vast differences in the severity of our conditions, I was humbled and honored.  And, when another acquaintance, this one formerly of my RESOLVE group, sought my advice on dealing with suspected thyroid disease in her family, I realized that I don’t just take, as it so often feels, but do give back in return.  Thank goodness I am not alone.

As my simple Tweet got “favorited” by thyroid disease royalty, I was overcome with both the geeky excitement of one who gets to shake the hand of an idol and an overwhelming sense of gratefulness that I live in an age when it’s possible for someone like me to be a single virtual step away from someone like her.  I am definitely not alone.

And, as the ESPN app on my phone alerted me to the news in Boston, and as Twitter and Facebook lit up with friends and family searching for, reporting on, and offering support to loved ones and total strangers, I was reminded that pain comes in all flavors.  Prolonged and abbreviated; expected and sudden; understandable and senseless; logical and visceral; deep and trifling.  But where there is pain, there is also often the reminder that we are not alone.

I’ve been in my own head a lot these past two days.  Though I do understand why, the events of the past 12 hours have encouraged me to remember the world outside my pain, my sorrow, my worry, my doubt.  My place in that world is most definitely worth fighting for.

Inequity

Today I paid what I hope will be the last of the bills associated with my third miscarriage.  And, it was the hardest of them all to pay because of the situations that gave rise to it.  Perhaps I’m numb, perhaps my spirit is just broken, but these days my emotional pain doesn’t center around the fact that we lost another potential child in February.  Instead, I just grimace at the general unfairness of it all, and the realization that this process has been made so much harder thanks to the American medical and insurance systems.

Our most recent pregnancy lasted to 9 weeks, but for only a week of that time did we actually have cause to hope.  Like both my prior pregnancies, my beta HCG values throughout the pregnancy were problematically low.  In the majority of normal, healthy pregnancies one’s HCG value will approximately double every 48 hours for the first few weeks of pregnancy.  But, like so much else in infertility and early pregnancy, beta doubling times are just an odds game.  Healthy pregnancies result from abnormal rises, normally rising HCGs can result in miscarriages.  But, when your in the thick of beta hell, it’s hard to believe you’ll come out on the right side of those odds.  And, at least so far, I never have.

The betas for my last pregnancy went as follows:

  • 3w5d: 41
  • 4w:     97 (doubling time 38.64 hours)
  • 5w:     1113 (doubling time 47.72 hours)
  • 5w6d: 1479 (doubling time 351.08 hours)
  • 6w5d: 2038 (doubling time 363.22 hours)

At 5w6d we were told to expect a miscarriage, then three days later, at the appointment scheduled for the purposes of confirming the loss, I saw the heartbeat on ultrasound for the first time.  That little heartbeat hung around for 3 more weeks despite extremely poor bloodwork results.  On Valentine’s Day we found out that the heart had finally stopped.  We weren’t destined to be one of those lucky couples who beat the odds and succeeded despite bad lab results.

The heart stopped on a Thursday, and we decided straight away that we wanted to have this embryo tested for genetic abnormalities.  The best way to obtain a sample capable of being testing was to have a procedure called a dilation and curettage (D&C) performed.  Essentially, the cervix is dilated and the “products of conception” (POC) and some of the uterine lining are scraped out and sent off to pathology.  (If there’s one thing you learn pretty quickly in this repeat loss/infertility game, its that so much of this “medicine” is just about as low tech as you can get.  And, as a result, hasn’t actually changed all that much over the years.  During my first miscarriage, my husband’s 85 year old grandmother (who had suffered losses of her own as a young woman, including the heartbreaking loss of a new born) asked why we weren’t just having a D&C.)

So, heart stops on Thursday, we ask for a D&C on Thursday, we get scheduled for the following Wednesday.  Absolutely astonished doesn’t even come close to explaining my state of mind at the time.  Aside from the fact that I was basically getting sent home (yet again) with a dead baby inside me, I was irate that I was being made to wait nearly a week during which time I was certain I would either miscarry on my own or, if not fully miscarry, at least lose the opportunity to perform the testing that we needed to have performed as the products decomposed.  “Sorry, that’s the best we can do,” said one of the revolving door of smug nurses.  So, we waited.

On Friday afternoon I started to spot.  I called right in.  “We can move you to Monday, but that’s the best we can do.”  Tears and screaming and a lot of, “I’m not going to fucking make it ’til Monday”s went unheeded.  It was, after all, the best they could do.

On Saturday morning the contractions started and the bleeding picked up.  My clinic has Saturday hours, so I called first thing and reported that the process was well and fully started.  The response, “Well, I don’t know what you want us to do for you, I’ve already rescheduled you for Monday!”  Being no stranger to this IF game, I asked if I could collect the products at home and drop them off for testing at least, to which she replied that their clinic won’t test products passed naturally.  She strongly insinuated I was bat-shit crazy, actually, to even think that naturally passed products could be tested.  Through my tears and hysteria I told her of my friend, C, who did just that for m/c #2.  This bravest of mothers who wandered the empty halls of her local hospital on Christmas Eve carrying yet more lost hopes and joy in a Tupperware container, kept cool with a bag of frozen peas.  I told her of the other women, whose stories I’m less familiar with, but who still got test results from products passed naturally.  She remained completely unfazed.

So, Saturday morning I called the on-call nursing line for our local rural hospital.  Without mincing words I explained the situation, I asked if they had a pathology lab in their large hospital network, and I inquired whether they had doctors on call at the emergency room that could perform a D&C.  She was the first faceless voice on the phone throughout this entire process to give me any sympathy.  I was actually completely taken aback when she offered her condolences and genuinely asked me how I was holding up emotionally.  Her care and concern actually reminded me that, wait, there was some heavy shit going on right now and I wasn’t just calling in to make an appointment for a mild medical inconvenience.  She promised to get in contact with the OB/GYN unit at our nearest mid-sized hospital (about 30 minutes from home), and call us back.  When a representative from that unit called back about 15 minutes later, I was in the bathroom bearing down and passing small clots.  My husband answered and was informed that, yes, the staff could perform a D&C and that, yes, the products could be sent off for testing.  In the middle of a snow storm we bundled ourselves up and headed for the emergency room.

An hour of waiting and intake and vitals later, the general ER doc came in to do a pelvic exam.  He noted I wasn’t yet bleeding heavily (something we had repeatedly told them on the phone and during intake) and informed us he doubted they’d be able to help us.  Next in the room was the OB on call.  He reiterated that I wasn’t bleeding heavily enough or in enough distress to merit an emergency D&C.  I’ll never forget the next words out of his mouth.  “You aren’t an emergency and it’s a Saturday.  My team doesn’t work on Saturdays, and I won’t pull them in for this.”

Abandoned by the clinic that helped get me pregnant and whom I’d already paid hundreds of dollars and abandoned by the nearest OB/GYN unit, we walked out of the hospital with the two sterile specimen collection jars they gave us to collect the embryo once I passed it at home.  Today, I paid that ER bill.

***************

By my best estimates, my miscarriage cost us about $600 out-of-pocket (and, of course, much more before insurance).  It would have been more, but I had already met my individual deductible for the calendar year on January 9 after my second round of pregnancy bloodwork.  Included in that $600 is Mr. But IF’s deductible for chromosomal testing performed on him during my D&C, the D&C we did ultimately do (for who knows what reason, I’d already passed the products), and my $75 visit to the ER where I received no testing and underwent no procedures.  Those are some expensive specimen jars.

***************

Earlier in the week I needed to look up eyewear coverage through our new insurance since Mr. But IF and I are both sorely overdue for new glasses.  I don’t know why I do it to myself, but every time I log in to my insurers site and bring up the detailed policy description I still find myself scrolling down to the infertility section.  It’s always a punch in the ovaires to read:

IVF: No coverage

but, this time, I opted to read further.  It continues:

Elective sterilization: 100% covered (no co-pay or co-insurance)

Abortion: 100% covered (no co-pay or co-insurance)

And, that’s the moment I realized what I had done wrong two months ago.  Instead of placing my fate in the hands of my rural podunk hospital, I should have found the nearest abortion provider.  I’m absolutely not being facetious, either.  The services they perform are the services I needed, and I don’t expect they would have sent me away with a collection jar.

I’m no idiot when it comes to the whys and the hows of the medical insurance industry, and, though I find it morally abhorrent  I also understand it is in their financial best interest to ensure I don’t procreate.  That said, my situation underscores the flaw in this supposedly unemotional, bottom-line only approach.  I paid for my miscarriage, but would have had no financial obligation for an abortion.  Medically, nothing separates an abortion from a miscarriage.  Indeed, miscarriage is not a medical term, the appropriate nomenclature is either fetal demise or missed abortion.  It is hard to take a step back from this situation and not feel like I am being punished for the mere act of wanting a child, because it is only that aspect of wanting and trying that separates my medical history from that of a woman wanting an abortion.  Indeed, the contrast is even more stark when I recall that my ectopic was, in fact, medically terminated.  I’ve had an abortion, yet my insurer didn’t view it as such.  And the only reason I can fathom?  Because these unemotional bottom-liners do, in fact, care that my motivation was to become pregnant.

These are always difficult discussions to have with myself, because if there is one thing infertility has done to me it is that it has strengthened my resolve to support a woman’s right to choose.  Years of giving everything I have to trying to become a mother, has made me willing to fight tooth and nail for other women to have the choice to not become a mother.  Part of it is motivated by self-interest – it’s hard to live in this era of personhood hysteria and not see the slippery slope that leads from anti-abortion activism straight to my broken ovaries – but, another part of it is also my growing belief in the importance of choice.  My infertility has stolen choice from my family-building decisions, and it’s been exceptionally hard for me to accept that my busted body, lack of access to quality medical care, and an insurance system that views my infertility as akin to breast augmentation, has removed my ability to choose when and how to grow my family.  Therefore, I can’t in good faith put countless other women and men through the same loss of control, the same hell, purely because their politicians won’t get out of their bedrooms.

Happy, sad, mad

And, as so often before, all hope dashed before we’ve even started.

Pretty much since the moment of my last miscarriage, I’ve been hinging all happiness on the fact that we would be able to try again.  And, not just try, but try with gusto.  Try 4.0, if you will.  We would be moving to injectable stims (something we’ve been discussing since early 2012), we’ve had our consults and testing with the amazing Dr. Braverman, and we just had a confirmed uterine pregnancy with heartbeat that lasted until 9 weeks.  Progress!  All these changes were actually opening me up to hope again.  I should know better by now.

Three little letters – A N A – just turned that happy to sad.  Last Monday I had my regular bi-annual appointment with the endocrinologist.  They monitor my thyroid status, prescribe my Metformin, and generally manage the care of my endocrine system and autoimmune disorders.  Basically, they do the things I would NEVER in a million years trust my RE or a GP to do.  Especially not my new RE – the one (I really hate), the only (within 100 miles), the incomparable (or insufferable?) Dr. Soulpatch.

Usually, I enjoy my visits to the endo.  I’ve been lucky over the years to have had three excellent endos willing to talk to me as an educated and informed patient, approach my case as unique and offer a treatment protocol tailored to address that uniqueness, and accept me and my opinions as a vital piece in the treatment puzzle.  In other words, my endo visits are nothing like going to the RE.  (I’m sure the fact that I get to remain fully clothed and don’t have to get intimate with the dildocam helps tremendously as well.)

At this particular visit I decided to bring up some nuisance symptoms I’ve been having off and on for at least 5 years (likely much longer… Mr. But IF and I disagree on the dates, but both concede it’s “been a while”).  Namely, I have bouts of severe morning back stiffness that are often accompanied by a scaly, itchy, dark rash on my hips.  I’ve never actively had a flair of these symptoms when it was time for my endo appointment, so I’ve never really had them investigated.  But, as luck would have it, ever since my miscarriage the back pain and rash are back.  (Salt, meet deep dark wound.)  The endo thought it would be a good idea to add a few more tests onto my usual battery, I said “What’s another pint, Dr. Dracula?”, and away we went.

The past two weeks have gone as follows:

Monday – Blood draw.

Tuesday 4:59pm – Voicemail from the endo.  “Call at your earliest convenience.  Something turned up in your lab work.”

Tuesday 4:59:30pm – I call back.  “Thank you for calling.  Our office hours are…” (Oh F you!)

Wednesday 8:00am – “Thank you for calling.  Our office hours are…” <click>

Wednesday 9:00am – Left a message with reception.  Someone will call back by the end of the day.

Wednesday 9:01am – Gotta pee… can’t leave phone… gotta pee… can’t leave office… gotta pee…

Wednesday 3:00pm – “I don’t know what to tell you.  We sent him a message.  Someone will get back to you.”

Wednesday 5:01pm – Liars!

Thursday 8:59:59am – “Yes, I see you left a message.  I’ll send another and mark it urgent.  No, I don’t have any access to your charts or the ability to share information with you.”

Thursday 3:00pm – Cuss out receptionist, feel bad, blame hormones, start crying…  She adds another “urgent” message.  (I suspect “urgent” actually means, “Seriously, don’t ever call this batshit crazy patient.  Make her SUFFER!”)

Friday 9:00am – “Listen, if I don’t hear something from someone, ANYONE, today, I will drive up there and protest in your waiting room.”

Friday 2:36pm – I quickly duck into our book vaults to page something.

Friday 2:36pm – Nurse calls. (FFfffffffffffffffffff………….)

Friday 2:37pm – Dial back.  Reception.  “I’ll leave a message…” <click>

Friday 3:38pm – IT’S THE NURSE! IT’S THE NURSE! IT’S THE NURSE! oh… I may be sick?  Something’s wrong?  I hadn’t really thought this through.  Oh fu…

So, yea, the much anticipated news is that my ANA panel (or anti-nuclear antibody panel) came back abnormal.  A normal titre level for my lab is 1:50, mine came back at 1:1250 for the speckled pattern.  Aren’t I a special little snowflake, eh?

So what’s it mean?  Likely, nothing.  False positives abound, Dr. B suspects it could be lingering effects of my body killing my baby (awesome!), or it could simply be further evidence of my body’s insatiable appetite for eating my thyroid (yum).

Medically, it means my body is producing antibodies that, instead of attacking foreign proteins (antigens), are attacking the nuclei of my own cells.  The particular pattern elevated in my instance suggests further testing for Lupus, Scleroderma, Sjogren’s syndrome, and mixed connective tissue disease.  The specialist that runs these tests is a rheumatologist and, I’ve learned in the past few days, that you should pray you never need a rheumatologist.  They’re tricky little bastards to get in with.  Seriously.  Schedulers won’t even talk to you on the phone unless another doctor vouches for you first through a referral.  Free market health care system my ass!

Ultimately, my RE has decided they don’t want to cycle with me again until I have more information about the ANA situation.  I get it, I really do, but do you know when the first appointment I was offered from the rheumatology gate-keepers was?  June 12!  Luckily, medical receptionists don’t know what they are getting when they get me on the line.  A few tears, a mention of my miscarriage, and an appropriately timed, “I’ve been trying to have a baby for over 3 years already, what’s another 4 months, right? <whimper>” bumped my appointment up to May 17.  But wait, she’s not pulled out all her tricks yet, folks.  Call rheumatologist #2, cry, fret, kvetch, and BAM April 23!

So, things are, I suppose, looking up.  That doesn’t mean, however, that I won’t cry (for real this time) when we walk into the drug store this evening to fill my new prescription for birth control pills.  Oh, and, wouldn’t you know?  We’ll be stopping at said pharmacy on our way home from delivering dinner to a colleague and his wife who are home celebrating with their new little miracle — the child they had by (wait for it, wait for it!) simply having sex one time 9 months ago!  How totally last century!

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The IF subculture on the interwebz is all abuzz today about Steve Wien’s blog post “Ten Words that Describe Infertility.”  And, the talk and praise is definitely just.

Everyone will have their own set of words to describe their process, but no one that has experienced infertility will be unfamiliar with any of the words Wien uses.  I never had despair over lost hope in a possible pregnancy in the sense that he discusses, because I’ve never had the experience of being “late.”  Lateness implies a predictability to one’s cycles that I can’t begin to wrap my mind around.  And, as sick and self-obsessed as this may sound, I actually enjoy the exposure and awkwardness of infertility these days.  I’ve said cervical mucus in a crowded bar on multiple occasions, and I don’t steer clear of openly and frankly discussing our issues to anyone dumb enough to stand near me.  I’ve embraced it as my second career, this infertility proselytizing.  (Hey, a girl’s gotta have hobbies!)  But, while my experiences with despair, exposure, and awkwardness are different, the feelings are still very much there.

I tried to figure out what my 10 words would be, but, in a rare moment of verbal parsimony (or, perhaps, a certain soul-searching laziness) I could only muster 3 raw words.  They are the words and emotions of this past week.

Happy to start a new cycle, sad to hit another road block, mad to be told to wait.  Happy to see my endo, sad my RE isn’t half as engaged, mad when my trusted endo let me down.  Happy I caught the nurse’s call (finally), sad to hear her news, mad I had to wait so long to hear it.  Happy to have a rheumatologist appointment next month, sad at the length’s I had to go to to get it, mad at a health system that only opens its doors to those willing to beg, borrow, and plead.  Happy to celebrate the birth of a new baby girl, sad that she’s not mine, mad that the joy is tinged with sadness.  Happy for the online and real life infertility support networks I’ve found myself in, sad at why we’ve found one another, mad at the struggles that unite us.

Happy, sad, mad.  They’re my emotional triad.

What is in a name?

As I sit here this cold Monday morning, Lady Grey tea in hand, kitties at my feet, waiting for the fireplace guys to come clean the pellet stove insert in our new home, I’m doing some reminiscing.

First realization (and if you’d known me a few years a go, this would be an utter shock), life is good.  No, really, it is.  I’m married to a man I adore, and who challenges, entertains, inspires, and, yes, infuriates me every day.  In 8 years I’ve earned two advanced degrees, numerous awards, been published in a premier journal, and, just this summer, had all this hard work pay off and lead to a new wonderful position in a new town, where we bought our new (old) house, and are making our new friends.  For whatever reason, I have earned loving and loyal friends throughout all stages of my life, and I married into a large family that, while very different from my own, loved me instantly and completely.  And, yes, there is the whole “kitties & tea” thing – that certainly never hurts.

Prior to early 2011 the realities of my life on paper were much the same, but life was most definitely not good.  I hurt.  Emotionally, physically, wholly.  Years of doctors appointments – high school physicals, college health center, grad school health center, new “big girl job” PCP – had left me with the belief that the only things wrong with me were those things I was doing to myself.  As the weight piled on, I was, at best, given referrals to therapists, and, at worst, accused of sleep eating.  Now, I was never thin.  Even while dabbling with an eating disorder in late high school and early college, I still never lost.  (Probably one of the reasons I “dabbled” rather than falling completely into that hell like so many women and men before me.)  But, years of silent calorie counting and exercise kept telling me one story, while the scale told me another.  By my mid-twenties I was gaining 20-30 pounds a year with a strict diet and exercise regime.

But, said the docs, you are depressed!  I knew I was depressed, I had no doubt I was depressed, and I’d most definitely been depressed since middle school.  And, thinking about how I still managed to be depressed even when everything in my life was going so good, just made me more depressed.  When my body started aching, my mind started failing me, my chronic constipation took over my life, and my desire for sleep reached a level that only an addict jonesing for his/her next fix could appreciate, I marched my fat self back to the doctor.  Apparently, the sleep was from depression, the body aches and back pain were from my tubby self sleeping too much, the constipation could be IBS or not enough water or my obviously bad diet, and the mind was me just needing to accept I was getting older… at 25.

Then, I went off birth control.  The same birth control I had gone on at age 18 because I was sick and tired of wondering when my next period would come, and when I would next need to miss a week of school writhing in pain and vomiting on the floor as my mom encouraged me to sip warm port wine.  My first visit with Aunt Flo (or AF as the cutesy types in the online IF world call it) was when I was 11.  From 11 to 18 my cycles ranged from 30 days to 10 months between periods.  My mom trotted me into the doctor, was told I was “young” and just needed time to regulate, and brought me home defeated.  When we mentioned the extreme and crippling pain I would have whenever menses did arrive, I was told to get used to the joys of being a woman.  When one older male physician told my mom that, “If your daughter’s cramps are as bad as you say they are, then I would think you’d be happy she cycles very irregularly,” I thought she was going to choke him out right there in the exam room.  So, at 18 I learned to stop worrying and love the pill.

Trouble is, you can’t really love the pill when you want a baby.  When I quit it in 2010 to begin building our family, I was not remotely surprised when I didn’t have another period for 48 days, then 43 days, 62 days, 58 days… I was 8 months into trying for a baby, and had had 4 periods.  More problematically, my friend the basal body temperature chart told me I wasn’t even ovulating.  Back to the doctor, more recommendations to lose weight, eat right, and wait for my body to regulate.  So we waited.

We waited until one morning in February 2011 when I woke up for work, looked at my husband, didn’t know who he was or what is name was, and started to panic.  When Mr. But IF had sufficiently calmed me down, he wisely brought me a telephone to call out of work for the day.  Trouble is, as he handed me that rounded chunk of plastic, I had no clue what to do with it.  “Phone” seemed familiar, the feel of the object in my hand seemed familiar, and even the thought that this was the item one used to order pizza, connect with relatives, and snag a work-free day seemed familiar, but how to actually accomplish those things with a brick named V-tech?  Nothing doing.  Mr. But IF had me to the doctor same day.  She asked me what I thought was wrong, and I told her what I’d told her several times before.  Please check my thyroid.  I begged, tears came, and she ran the tests.

I dragged myself into work the next day, and spent the day forwarding my phone to every new office or workspace I found myself in.  (I’m convinced, by the way, that Google Voice is one of the most essential tools in my battle with the health care system.)  When the phone call came I was wonderfully alone in an office with my husband.  Our conversation went something like this,

Nurse: The doctor wants to schedule a follow-up.

Me: Ok, great, when?

Nurse: Um, now!  Today.

Me: What were my lab results?

Nurse: Um, well. <Sounds of shuffling paper> There are quite a few…

Me: TSH, all I care about is the TSH!

Her: Oh, ok.  55.38.

Me: <Tears.  Tears.  More tears.  Tears of joy at being right.  Tears of anger for being ignored for so long.  Tears of pain for all my hurts.>

For those that don’t know much about thyroid disease, you’ll likely hear a lot if you stick around here.  Suffice it to say that the normal range now recommended by the American Association of Clinical Endocrinologists is 0.3 to 3.0.  On February 8, 2011, mine was 55.38.  I wasn’t fat; I wasn’t depressed; I wasn’t a complainer.  I was sick.  Very sick.

It took another year and a miscarriage to diagnose both the PCOS that was contributing to my absent menses and the Endometriosis that was making them so unbearable.  But, in that year I benefited from the number 1 lesson I’d learned through Hashi’s.  NO ONE WILL CARE ABOUT MY HEALTH UNLESS I MAKE THEM.

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So, 1,200 words in and I guess I’m finally to the point of this post.  (I’ve mentioned I struggle with brevity, right?)  Why have I named this little corner of the Web “Not When, But IF?”

The first meaning is pretty transparent I suppose.  Infertility (IF) brings with it a loss of predictability in one’s life.  Go to any infertility support group, visit any online support forum, or talk to your friendly neighborhood infertile (you know, that friend of your mom’s cousin), and loss of control is a theme you will hear about regularly.  We don’t know when, how, or even if we will be able to build our families, and it is because of IF.

Though it isn’t a theme I’ve yet to detail here, I should mention that at every doctor’s appointment during which I brought up my absent menses and ovulation and subsequent fears of future or current infertility, I was reminded that I was young, that these things take time, and that it would happen “when the time is right.”  Not if, but when, the cheery nurses would say.  But, for 1 in 8 couples, however, that couldn’t be further from the truth.

There is also a deeper, more personal meaning to “Not When, But IF.”  I often say to my support group that I have a complicated relationship with hope.  I’m still trying to decide whether I say that because it is nice and quippy and makes me sound smart, or if it actually gets to the root of something deeper.  It’s probably a bit of both.  For better or for worse, my complicated relationship with hope has a lot to do with the fact that I loathe it as a concept for its utter laziness.  When someone tells you to hope (chipper obnoxious nurses, my well-meaning Aunt, the stranger on the chat board), it feels accusatory, dismissive, and uninformed all at once.  Had I hoped more, would my body not have killed my last baby?  How could hope have detached the endometriosis adhesions connecting my bowel to my abdomen?  I hoped so damn much that my doctors would take me seriously and test my thyroid, but that hope wasn’t fulfilled until I demanded action.

Thus, the other meaning of “Not When, But IF.”  While I pray not everyone will have the difficult path to diagnosis that I’ve had, many unfortunately will.  And to those women I say don’t wait for an eventual moment when your doctor will take you seriously.  Change will come if you educate yourself, seek out your own answers, get second, third, fourth opinions, and demand that the time for attention is not some when in the future but now.

And, lest I sound nauseatingly Type A, self-righteous, and put together, let me add that doing the above can still be absolutely overwhelming and terrifying to me.  On Friday, I learned that I’m likely in for yet another battle in this long war toward health.  Routine labs run by my endocrinologist last week now reveal a highly elevated ANA titre (1:1250 speckled pattern) that could indicate an additional autoimmune disease (Lupus, Sjogren’s, Scleroderma, and mixed connective tissue disease being the most likely culprits), could be the lingering effects of my immune system killing my last baby, or could be absolutely nothing at all.  But, until I find out, I’m stuck sitting here, wondering when and if I’ll ever get my answers.