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?

Failure to Thrive

This post has been a long time coming.  It’s also going to hurt to write.  But it will also help explain my sparseness in posting since Baby ButIF’s appearance.

I’m pretty sure that if you went back and read through a lot of my pregnancy posts you’d catch me saying here and there, “if I’m able to breastfeed,” or, “I talked with my counselor about ways to overcome my disappointment if I can’t breastfeed,” or even, “With PCOS and thyroid disease I’m pretty sure breastfeeding’s gonna be a total crapshoot.”  So, yea, I knew the cards were stacked against me.  Just as surely as my F-ed up hormones made it damned near impossible to get and stay pregnant, I knew they could also make breastfeeding a challenge.

Rather than be fatalistic about it, I thought I was being rational and proactive in preparing coping strategies in advance.  Though I have endless angst over it, I’ve become used to my body not working quite right.  At least, I thought, I could put that hard-won knowledge to use and spend some time – say 9 months – setting my expectations.  So, as the months of my pregnancy went on and my breasts failed to change one single bit I was pretty certain I was getting my answer.  We’d go to the hospital, I’d deliver, I’d skin-to-skin and attempt to feed him, I’d fail to produce anything, and we’d jump on the formula train.  Easy, peasy, no?

In fact, I was so worried about setting unrealistic expectations that I – yes, Type A, research everything to death me – didn’t do a lick of research into breastfeeding.  I called our insurance just to have an idea what my breast pump benefit was, I registered for a bottle brush and a nursing pillow, and watched a BabyCenter video on breastfeeding holds, but that was literally all I did to prepare.  Just as I’d avoided all pregnancy and parenting conversations for 4.5 years, so too did I spare myself from all things breastfeeding for fear I’d never get to put that knowledge to use.

Trouble was, that lack of preparation led to some pretty uninformed assumptions on my part.  I’d assumed it would be an all or nothing scenario.  I’d either have milk, or I wouldn’t.  My body would work, or it wouldn’t.  I’d be pregnant able to breastfeed, or I wouldn’t.  Black-and-white with no room left for gray.

When the day came for what I thought was the final verdict on breastfeeding, I was anxious.  I asked for a lactation consultant (LC) as soon as we were transferred to the postpartum floor and she quickly arrived despite it being almost midnight.  The first words I said were a simple, “I don’t know if this is going to work.  My breasts didn’t change at all during pregnancy and I have PCOS and Hashimoto’s.”  She was encouraging and said, “Well, let’s try and hand express and see what’s there.”  I was skeptical but started squeezing as instructed and giggled like a silly school girl when a blob of gorgeous yellow colostrum quickly beaded up on my right breast.  “This is going to work!” I thought.  “I’m going to be able to breastfeed!”

For the rest of my stay in the hospital I followed instructions and woke him every three hours to feed.  In the 36 hours between little man’s delivery and my discharge from the hospital I saw 4 different lactation consultants and heard different versions of the same advice multiple times.  He didn’t need much right now.  It was normal for a newborn to be sleepy.  Yes, I’d need to wake him to feed until he regained his birth weight.  No, it was far too early to start thinking about pumping.  Everyone can breastfeed as long as they try hard enough and have enough support along the way.  And, yes, I was doing wonderfully.

On the morning of our discharge out little man had dropped 11% of his birth weight, but we were still cleared to leave.  They reminded me that since he’d been born in the evening and we were being discharged in the morning that a full 48 hours hadn’t passed and that was why he’d lost slightly more than their 10% upon discharge standard.  He was having wet and dirty diapers, latching like a champ (when awake), and I had the support and education I needed to be successful.  I accepted it – happy to get home to my own bed, my own shower, and start my so longed-for life as “mom.”

We were discharged on a Saturday, meaning our first appointment with the pediatrician would fall on a Monday – his fourth day of life.  When Monday rolled around he’d lost an additional 7 ounces.  Our extremely breastfeeding friendly ped felt that our problem was his sleepiness; he just wasn’t awake enough to get an adequate amount down each time.  She sent us off with hugs and words of encouragement and scheduled us another appointment for the following day.  24 hours later – despite 8 hours of active nursing logged in my baby tracking app, no matter the fact that my husband dutifully jabbed his thumb HARD into our little man’s foot every 3 hours like clockwork – he’d gained exactly 0oz.  Nothing.  The ped said not to worry.  As long as he wasn’t losing at this stage they were happy.  Keep at it, drink lots of water, keep waking him however possible, and return in a week.  You’ve got this!

I put my heart and soul into breastfeeding, while, at the same time, I felt like I was falling apart.  The morning of his 2 week appointment Mr. ButIF asked, “Do you think there’s something wrong with your thyroid?  You really don’t seem right and I know I’ve seen this before.”  I knew he was right.  The fatigue I was feeling was more than typical new parent exhaustion.  And, given my med-free birth, I couldn’t think of a single thing that could account for the all-over body numbness I was feeling.  I’d only felt that once before…

But, I knew I’d sacrificed my sleep and sanity for a good cause.  I just knew my baby had grown.  Turns out, however, he’d lost yet another ounce.  My perfectly average, 50th percentile 7lbs 6oz boy at birth was now barely on the breastfeeding growth charts at 6lbs 7oz at 2 weeks old.  Now the ped was getting a little worried.  She recommended the herbs Fenugreek and Blessed Thistle, talked about the drug Domperidone – which she couldn’t prescribe as 1. It’s not available in the US market, and 2. She’s not my doctor – and sent her practice’s LC in to teach me how to use a supplemental nursing system, or SNS.  I was barely holding it together when the LC entered the room with a jug of ready-made formula and the SNS – basically a torture device syringe the lactationally challenged mother fills with formula or expressed breast milk, tucks into her bra, and hooks up to a feeding tube she can either tape to her breast or hold with one of her 4 available hands and sneak into her fussy, hungry (and obviously endlessly compliant) newborn’s mouth when he isn’t looking.  I tried out the SNS in her presence for about 5 minutes – it took the combined power of six hands (mine, hers, and the misters) to get it working – before she sent me off, soaked through my shirt, bra, pants, and even underwear with formula, with a “Good luck, you’ve got this, use the SNS at every feeding!”  I spent the next several days (coincidentally, the first days I was home alone with Baby ButIF since the mister was back to work after his 2 week “vacation”) crying more than my hungry newborn.  I stunk of formula, I hated my body, I was lower than I ever thought I could get with my longed-for miracle in my arms.

When we returned home from that 2 week appointment I immediately called the high-risk OB who’d managed my pregnancy.  Three agenda items:

  1. Please test my thyroid, something is off!
  2. Can I got back on Metformin?  I can feel my PCOS reemerging and it might help me breastfeed.
  3. Will you prescribe Domperidone to help with breastfeeding?

I got the following three answers from the triage nurse.

  1. No, you’ll have a thyroid panel done 6 weeks postpartum, and no sooner.
  2. No, Metformin is not safe while breastfeeding.
  3. Absolutely not.  Take Fenugreek and drink water.

I cheered myself up by crying over my tiny son while I attempted to shove the SNS tube down his throat again.

Our 2 week appointment was on a Thursday, we ordered an infant scale and had it overnighted to us on Saturday, and when our precious baby boy woke up with sunken eyes and even more lethargic than usual on Sunday we weighed him.  He was now 6lbs 4oz.  From a birth weight of 7lbs 6oz.  It was time to stop fooling around with the SNS.  We mixed a giant bottle of formula and my husband fed him while I called and cried my eyes out to the on-call LC at our delivery hospital.  She assured me “true” supply problems were very rare, and that I should keep on with the bottle today and pump religiously every 3 hours for the next 48 hours just to see what we were working with in terms of my supply.  I did exactly as ordered.  Pumping through the night, through the days, pumping with one hand while trying to comfort a newborn just learning what it felt like to be well-fed with the other.  In 48 hours of round the clock pumping I pumped 5 ounces.  Total.

I did two things on Tuesday.

  1. Called my endocrinologist seeking thyroid testing.
  2. Found an amazingly supportive low-supply Facebook support group.

The support group informed me that Fenugreek – that herb that had been recommended by friends and family members, our ped, and, yes, even the high-risk OB practice who had carefully monitored my thyroid throughout my pregnancy – was, in fact, contraindicated in women with thyroid disease.  As in it could make my supply WORSE not better and totally throw off my thyroid in the process.  I immediately stopped it.

The endocrinologist consented to the retest, but wanted the labs drawn at their offices over an hour from my home.  That wasn’t happening with a 2.5 week old that needed to be forced into being fed every 3 hours, with a husband that was back at work full-time, and with a mama that was barely sleeping.  I begged them to let me do it locally.  The cheery nurse on the other end of the phone agreed and said, “OK, I’ll send off the requisition today!”  I said, “Great, here’s my email address.”  She replied, “Oh, no, we can’t email.  I’m sending it in the mail.”  I celebrated that minor victory by crying as I prepared another bottle of formula for my teeny, tiny son.

We first suspected my thyroid was off at 2 weeks postpartum.  I got my bloodwork results at 5 weeks, 1 day postpartum.  Normal range 0.3 to 2.5.  Mine?  0.07.  I forwarded the values to my husband in an email with the subject line, “I’m not fucking crazy!!!”

Things started to turn around then, but remain a challenge.  I’ve since found a fabulous IBCLC (International Board Certified Lactation Consultant) through our county health department who makes weekly home visits to help out (and, oh does she!).  I restarted my Metformin (against doctor’s orders) and saw an immediate increase in my supply.  I ordered Domperidone from a foreign pharmacy and, again, saw a supply increase.  And, most importantly, my breast AND formula-fed baby started staying awake, gaining ounces, and smiling, cooing, and doing all things happy and healthy babies should do.  On any given day he gets around 50% from the breast and 50% from the bottle and that’s a HUGE increase from where we stood a few short weeks ago.  I try to remain realistic with my goals – he’ll never be exclusively breastfed – but I know I’m doing the best that I can, and that’s all I can ask of myself.  I worry about how things may change when I return to work on September 10, but that’s a bridge I’ll have to cross in the coming weeks.  Thankfully that’s a bridge I’ll cross armed with the info and support I most certainly didn’t have in the beginning despite all the LCs and MDs and random strangers on the Internet who told me otherwise.

No, not every woman can breastfeed, but I’m thankful that I had the hard-won strength, determination, and drive that IF gifted me to accompany me on this difficult journey.  Breastfeeding is not black or white, all or none.  I’m finding my way living in the gray.

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.


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.

Birthing a blog…

… and nothing else.


We all have our elevator stories.  We boil our lives down into quick couple-liners.  Me?  I’m a wife, I’m an archivist, I’m an academic.  I enjoy beer, football, technology, and history.  I code and I cross stitch.  I’m a displaced Pittsburgher, and a proud Pennsylvanian.

If that elevator got stuck, you might hear a little more.  I lost my mom to cancer far too young; I spent my teens over-achieving, while doubting my appearance, my sanity, and my self-worth; I married my best friend at 22; and, I’ve always wanted to be a mother.

I’m also infertile.


At 26, my husband and I celebrated our fourth wedding anniversary, we marked 1 year in our lovely little Cape Cod home, and I had a fulfilling and challenging job.  I did it all “right,” had all my ducks in a row, and it was time for a baby.

Now, at 29 (soon 30), my arms remain empty.


I often quip that I wanted a baby, but all I got were these lousy diseases.  Hashimoto’s thyroiditis, Polycystic Ovarian Syndrome (PCOS), Endometriosis, Raynaud’s, and (the world’s best named genetic mutation) MTHFR A1298C.

In three years, we’ve also had three miscarriages.  I’ve hosted a large family Thanksgiving the same week I walked into maternity triage to terminate an ectopic pregnancy, I’ve driven 12 hours in one day for a 1 hour consult with one of the world’s only Reproductive Immunologists as my third pregnancy failed, and I can compete like a pro in the infertility pain olympics.

But, I don’t want to compete in the pain olympics, and I strive to wear my infertility like a badge of honor, not shame.  These three years have brought me friendships I could never have predicted with strangers across the globe.  Women with whom I’ve cried and celebrated, and for whom I’m daily thankful.

My infertility has made me strong.  I founded a RESOLVE (The National Infertility Association) support group, I’ve raised money for infertility awareness, I’ve walked in the Walk of Hope, and I’ve written Congressmen.  From a book-smart yet reserved girl, I’ve transformed into an assertive and proactive woman.  I’ve questioned doctors and lived to tell about it!  (A feat I once thought would never be possible.)


So, my elevator speech.  Today even the short one includes my infertility.  It’s one of the largest influences in my life, and I’m not remotely afraid of it defining me to others as it has come to define a large part of me to myself.

I’m not a mother, and I may never be.  But I can raise awareness of infertility, I can try and rear in others a willingness to speak up and fight for themselves, and I can birth this blog.  And, that’s something I’m tremendously proud of.