staving off the feel-good blues

Yesterday I visited my acupuncturist, and our conversation went something like this:

A/P:  How are you feeling?
Me:  Pretty nice.  I've been taking my supplements....teaching more zumba.....trying to get my knee healed to dance again, I might try some pilates....enjoying swimming.... I got a massage last week....we're going to the beach soon.....
A/P:  Oh, so in other words you're living like a normal person.

You know, it's never occurred to me that the lifestyle was abnormal, at least until that fateful RE appointment in June when I learned just how badly my egg reserve sucked.  I think I had some basic understanding that ttc when you're a 40 year-old with three consecutive miscarriages under her belt is not for the faint of heart. But peeing on sticks, having hundreds of vials of blood drawn, getting scanned and poked and vaginally prodded on a regular basis, all of this was my normal. And then I was exhausted.

This calm summer, where I do things like order only somewhat goofy fertility yoga videos (more on this in another post, I PROMISE) and take nice long walks on sunny days, all of it feels sort of , I don't know.... indulgent?

I have a somewhat high-stress do-gooder activist job, I get paid to advocate for people who are struggling for economic security.  Part of that involves really absorbing the struggles that people are enduring in my City, whether it's single mothers who are trying to make ends meet or elderly workers who are exhausted and unable to retire.  But ultimately I do what I do because I love it, and as it happens professional empathy pays my bills.

Prior to my doomed pregnancy with the cancer baby, a ballet class or two a week was enough to keep me (relatively) sane and happy, even with this career choice.  Sure, I've been and always will be that person who cries easily.  I've been and always will be a little high-strung.  I've had and always will have a touch of OCD.  But seriously, there's nothing like carrying a succession of babies that will never breathe to suck the joy and calm out of life. And in turn, morph a relatively sane woman into a walking basket case.

Confession time:  you know that cynic who smirks when she sees facebook posts about wellness and zen and internal peace?  Yeah, that chick was me.  "How the hell can I think about my own inner peace when there's such a god-awful tumultuous world of suffering out there?" said the obnoxious, sanctimonious cynic.  (I should add that being raised in the Jewish faith and cultural tradition doesn't help matters on this front).  And then check it out, the universe gives quite the smack-down to the cynic.  "Oh, you think it's frivolous to  read about personal wellness?  Okaaaaay, here's some personal suffering.  You want to do something mundane, like have another baby?  Think again bitch!"  (OK, so the universe probably doesn't talk like this).

I'm sick of feeling existential guilt for doing nice things for myself. That kind of thinking stops right here, right now. Because I feel good and that is not indulgent.  It is awesome.

The double-edged boards

These past few weeks of reprieve have been good for me.  My supplement cocktail is in full swing (I carry a pill sorter and it's kind of embarrassing to admit that they don't all fit in there).  I have my gluten/sugar/processed-free meals sorted out.  I got a massage.  I am doing my nails and looking forward to a hair cut.  I am getting pretty fit and boosting my zumba class offerings this summer.  We're not timing intercourse, so with that stress out of the equation my marriage is in a pretty happy place now too.

But it's with this increased mental and physical health that I am able to look at some of my daily activities with a keener eye.  Today I developed some insights onto my support board habits on Babycenter.com.  Namely, I have an actual habit, and it's not necessarily a healthy one for me at this time.  Because sometimes the discussion threads themselves end up functioning as "triggers" to my sanity.  When I read women lamenting that they are 35 and "I am so old, time is running out" well, yeah, that's kind of hard to read when you're 40.  Or the fears often posted that "my children will so far apart in age" threads I see.  Yeah, those can cause some shitty feelings to stir up inside of me too. Because, well, I can't do anything the fuck about the fact that if I am ever lucky enough to carry a healthy baby into this world, Niblet will be at least 6 years old.

Part of the problem is that I'm on Too. Many. Boards.  From "Molar and Partial Molar Pregnancy Support," to "Recurrent Miscarriage Support," to the newly added MTHFR support (and these aren't even half of them).... the sheer volume of them sort of makes me feel a little freakish, just logging on. 

And then I realize that for all of the connectivity that the support boards offer to these clubs that one wants to belong to, the fact remains that we all come from such different places, with different expectations for our lives and happiness.  And that's absolutely okay.  We are connected by loss, we're not frequenting the boards to have conversations with ourselves.  The boards have been critical to my survival.  I mean, where else can I safely express my fears of seeing pregnant women or newborns without receiving judgment?  Add to that, so many of the women have become my friends and deepest confidantes.  We cheer each other on, we are virtual shoulders to cry on. 

But I am also seeing how I need to step back a bit, in the same way that I am easing back on my mission driven, scientifically precise reproductive habits this summer.  The boards have been something of a lifestyle choice for me for over two years.  Just as I've done with sugar and gluten, I need to kick the habit.  I am probably going to approach it the way I've done caffeine.  Drink much much less.  So, I will lurk a little, I will check in on friends, I will offer an insight or two if there's a matter that I have unique expertise on (e.g. diagnosis and treatment of Asherman's).  But in terms of the amount of time I devote, it will probably look like a hiatus. 

Summer reprieve

So, I was recently introduced to a friend of a friend, another woman had a similarly rough go of reproducing. She gave me a lead on a local doctor who treats High-FSH patients.  Seeing as this woman (who is incidentally older than me) is now enjoying life with a beautiful baby, it would have been foolish not to follow the lead.

I just got off the phone with this doctor's nurse coordinator, who listened as I relayed my "complicated" fertility history, and stated  "I'm not surprised" when I noted exactly which local clinic saw me to the door.  She cheerfully said Dr. K would take me on as a patient, though I would have to wait a lengthy time for an appointment.

Barring aside an opening on their wait-list, I am scheduled to see Dr. K on September 15th.

I am surprisingly okay with this.

You know, honestly, there's a fair degree of relief to be found in not having to even think about more fertility testing or potentially even cycling during the summer.  No blood work.  No poking, no prodding.  No fretting over lab results.  No racing to the clinic or badgering my poor husband for sperm on demand. I can zumba to my heart's content and get a slammin' beach body.  I can go on vacation worry-free.  I can continue dutifully downing my vitamins and supplements, which now include DHEA in addition to the Ubiquinol, Vitamin D and folic acid-free prenatals.  More on that:

I recently read this book

 

While it is essentially a re-hash of many things I already know, it bolstered my confidence in a regimen of egg quality improvement based on diet and supplements.  This regimen takes three months to work.  I have just about one month down, so in many ways a September appointment is perfect timing.

I was just on a support board giving a woman who underwent a failed IUI cycle some advice to take a little reprieve, regroup, clear her head.  Maybe I was on to something.

weak-kneed.

For the past month, my life has been consumed with balancing a demanding day-job with reproductive endocrinology.  The emotional pendulum has swung in a bad direction for many weeks, leaving me feeling weighed down by the stress of my work-that-pays-the-bills and downright suffocated by the very bad news I keep receiving from REs.  Every day I have carried the hope that I would not allow all of this to crush me, and as far as basic hopes go, I have done okay, I suppose.  I sleep.  I eat.  I mother my niblet. I hug my husband.  I cook our dinners.  But honestly I have had little joy.

But you know the way some people's knees predict the weather?  Well, this weekend, it was my creaky kneecap that predicted a way forward. I need to heal. I need to dance again. 

It should come as no surprise that I haven't had any time to either take or teach dance classes in the months following my last miscarriage.  Making matters worse, my left knee is a mess, with one kneecap looking pretty off-kilter to the naked eye.  When I was in NYC a few weeks ago, I actually took a ballet class and was completely hobbled after the barre  Balletophiles may know what I am talking about when I say that there's a point in every class when some of the, umm, ladies of a certain age start to bow out of the class.  In what was the ultimate crush to my ego I had to bow out with them, as I was unable to execute the pirrouettes and jumps that I love. Oh sure, I can walk, and have taken up swimming many laps at the pool to get workouts in, but that's not good enough, I need to MOVE.  You may recall that after my first miscarriage, I became a licensed zumba instructor because it gave me so much joy.  I also heaped on ballet classes that I love.  Not to put too fine a new-agey point on it, but dance is my bliss. 

So this weekend, when I woke up in the morning with knee pain after doing nothing I realized I have to get back into physical therapy.  I have to heal some very real physical issues that are preventing me from dancing.  Embarking on a treatment plan will certainly take time and energy away from acupuncture and all of the other appointments I have crammed into my life to save my ovaries.  But hey there universe, I'm writing to say I hear the wake-up call  Loud and clear.

We pause for a moment of hilarity

It's like she has a camera in my fucking house.

http://www.youtube.com/watch?v=XmvYVY3i0Zo   

exactly how much worse could that have gone, well, gee I don't know.

Oh. My. God. This is aproaching David and Goliath. Sisiphus pushing a fucking rock.  Little engine that can't. I am feeling more and more doomed by the second.

So, that hinky fallopian tube we discovered on the HSG?  Yeah, nice to get such a fleshed out explanation on that Dr. K.  Not.  It turns out there could be fucking scar tissue on it. Based on the image I saw, the dye flushed through my uterus was stuck in one tube, though there was some space for it to come out.  Dr. B recommends removing the tube entirely because IF there is scar tissue it could cause fluid to pool in my uterus and impede implantation, like 50% of the time.  Or even better, jack up my percentages of an ectopic pregnancy to 10%.

This means that even if I had one million dollars to spend on donor eggs (more on that later), without surgery the IVF could truly fail, despite the "beautiful uterus" Dr Cuddles used to wax rhapsodic about.  Smack my fucking head.  But wait! Surgery (which would have to be laparoscopic because god forbid anything be easy) could cause more scarring to form, because ya'll, according to Dr. Genius I appear to be prone to scarring.

You know, I steeled myself to enter into this consult fully expecting a cloud of doom about my FSH.  Well, sure my FSH is elevated and my fertility will start to decline fast, but this deeper explanation about my fallopian tube honestly sent me over the edge.

I am so fucking tired.  Ridiculously tired.  Since our cray cray idea of giving Niblet a sibling began, I have experienced FIVE surgeries, THREE miscarriages and COUNTLESS invasive, painful tests.  I have donated somewhere along the lines of hundreds of vials of blood towards the endeavor.And I have nothing to show for it but heartache.

And the donor egg pitch, oh wow, don't get me started on my ability to choose eggs from women who are interested in the arts or sports.  All for a starting price of $14,000 a cycle (none of which would be covered by insurance).  It made my head spin.

I feel incredibly unsettled right now -  and yet, I also have a really clear visualization of my next steps.  I have to get a second opinion.  I have to request all of my medical records, including the HSG slides from this clinic.  And with those records I have to run - not walk - to a Dr who treats higher-fsh patients without pitching the virtues of carefully screened egg donors.  Egg donation can be on the table years from now, assuming my uterus doesn't further deteriorate, but my insurance covers one more IUI and three cycles of IVF, and meds up to 90% all using my own eggs.  I have to see what an RE who deals with cases like mine would say, particularly about the need for more surgery. 'Cause I've had a ton of problems reproductively, but implantation has never been one of them.  Miscarriage due to chromosomal problems has.  Do I hedge my bets on this one?

My AMH was never retested because according to Dr B that number doesn't fluctuate as wildly as FSH.  My AMH is currently about .60.  Low, definitely.  But not undetectable.  There are still eggs in my ovaries dammit, and I am determined to find one of the good ones.

home

I have spent the past few days in NYC with Niblet, trying to rest and re-charge.  Unfortunately, the best laid plans, yada yada.  I spent far too much time frantically researching "HIGH FSH" and trying to identify doctors who might allow me to move in a direction... somewhere.  Anywhere but donor eggs.  My parents and I talked through all sorts of scenarios, including me trying to go through three consecutive cycles here, a destination for the complicated and/or AMA women out there like me, that happens to be in NYC.  But as kind and incredible as they are, the conversation ultimately left me more stressed out (sadly, all of my conversations with my parents about RPL eventually leave me more stressed out, well-meaning as they are).

When I finally returned home on Sunday I realized I was a wreck.  Husband and I had a conversation about the toll this has taken on me, him, Niblet.  How we have been in this cycle of pregnancy and misery for over two years.  Yes, I should keep pressing on, but given that I am already the bread-winner of our household in a demanding full-time job,  I shouldn't drive myself nuts by trying to make something like cycling out-of-state work.  Yes, it works for some women - and I extend mad props to those women - but I am not one of them. I need my home. 

Tomorrow will be a visit to the kindly Dr. B, something that I hope provides me some "closure" with this clinic.  I have a bajillion questions for her too, including, "Can clomid cycles spike up your FSH?" and "Exactly what IS wrong with my tube, as per Dr. K and my recent HSG?"  I have preemptively scheduled an appointment with my acupuncturist later that evening to decompress.

After that?  Well, I'm not quite sure.  There is a doc in town (in the same medical complex as Dr Cuddles, it turns out) who has something of a reputation for taking the sad-sack-high-fsh-ama cases like mine.  Husband and I agree, he's worth a shot.  I dismissed his clinic earlier due to low success rate stats for my age group -but seeing as I am now among the ranks of the island of misfit toys in fertility-land, I am not in a position to care now, am I.


Ahhh, the joys of baby-making when the task is placed in the hands of the emotionally traumatized.