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.

5 thoughts on “What is in a name?

  1. Pingback: The Unbearable (Un)Lightness of Peeing | Not when, but IF

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  3. Learning to be my own best advocate is HANDS DOWN the best “change” in me thanks to IF. I had no idea how necessary that would be in a PCP/OB world that unfortunately knows very little about the issues that ALI members face.

  4. Pingback: Total fucking breakdowns have their perks | Not when, but IF

  5. Pingback: Resolve to know more about the lasting scars of infertility | Not when, but IF

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