I want to be *really* sick

If you were checking in to find a happy and hopeful update, sorry to say this isn’t it.  But, come to think of it, if you were expecting happy and hopeful you probably clicked on the wrong blog.  Ain’t no baby dust and unicorn poop in this corner of the Interwebz.

My baseline appointment this morning was a train wreck.  So, generally speaking, things went about as well as they always do.  I’ll be the first to admit I’ve been in a bad mood since our latest BFN and decision to call it quits when 2014 arrives, but this morning felt cruel and unusual.  It felt personal.  And, I don’t want visits with a doctor to feel personal.  I think that’s why IF and I have such a rocky relationship.  I just want to be sick; IF wants me to chit-chat, groove to the whale sounds, order up an insemination, and enjoy my time at the fertility day spa.  Well, as long as it’s not a weekend or a holiday.  That’s just asking too much…

It is my belief that the biggest IF injustice – that status quo that brought me to advocacy, fuels my outspokenness, and drives my support for others in the IF trenches – is the widespread practice of classifying infertility as a cosmetic issue, a mild medical inconvenience.  Our insurance carriers deny our requests for testing, diagnosis, and treatment largely under the banner of procreation being a lifestyle choice.  Now, I’m not quite sure how I chose to live the lifestyle of a woman crippled by constipation since the age of 16 thanks to her bowel being attached to her abdomen by endometriosis adhesions, but apparently I did.

Last summer I was fortunate enough to have the opportunity to move to a state where state insurance code requires endless “detach her bowel from her abdomen free” cards, but many aren’t.  I know many have it much worse.  Each time I think of the financial sting we will feel if/when we do our one (and only) IVF, I remember how scary it was to be living in a state where even quality of life improving surgeries for my endometriosis would have potentially come out of pocket.  It could always be worse.

Playing the “pain olympics” is a very real thing in the world of IF.  And not just because we’re all hormonally hyper-charged, bitter, barren bitches (though there is some of that).  Engaging with others in the IF community frequently takes on the feel of driving past a traffic accident.  Some of us are in what remains of the car wondering where that truck came from, while others drive past saying, “I’m so glad that wasn’t us!”  Yet we all silently acknowledge that there might be a truck with our name on it just around the next bend.  So we roll up our windows, fasten our seat belts, turn up the music, and hang on.  And we largely do this alone.

The loneliness of infertility is a prevailing theme in many blogs, at many of my support group meetings, and on many online forums.  The cause of the loneliness – both real and perceived loneliness – varies.  Some hide their diagnosis fearing the pitiful looks and inane advice the news might elicit.  Others find discussions of infertility – inextricably linked as they are to sex and intimacy – too uncomfortable to put into words.  Some may wish to open up, but have partners (of either sex) who just aren’t comfortable taking that step.  And others, myself included, do ultimately open up only to find themselves feeling, at times, lonelier than ever as evidence of societal ignorance toward infertility astounds, as your fertile supporters grow tired of your story and your battle, and as your former sisters in infertility move from trying to having (whether through adoption, through pregnancy, or through acceptance of a childless future).

But all those causes of loneliness are well-explored in the land of IF.  The pain olympics, the feelings of privacy invaded, the hatred of pity and the anger of trite advice, they’re all over the IF landscape.  It’s not to say these topics aren’t important, because they are, but there is one that is left out.  It’s the Mack truck I’m fairly certain has my name on it.  In large part, it’s what is most likely to toss me off the highway toward parenthood and leave me bruised and alone in a ditch with no will to go on.  It’s my experiences with my infertility-related medical providers.

Since my infertility springs from other chronic health issues – Hashimoto’s, PCOS, endometriosis, non-specific autoimmune markers, MTHFR – I’ve had plenty of time to get used to the idea that I’m sick.  In many regards, IF isn’t my illness.  IF is just a symptom of my illnesses.  That makes me different in many ways from others in the IF trenches.  Again, not worse, not better, just different.

Rather than be upset by this situation, I’ve actually found an odd type of peace from it.  Battling IF alongside the discoveries of several of life-impacting health conditions has somehow made it all a little less scary, all a little less dire.  Many times when I’m speaking with friends, family and total strangers that reach out to me in response to thyroid concerns, one of their first reactions is some variant of, “But, I don’t want to be sick!”  They worry about becoming “dependent” on medication, they wonder what they “did” to cause their condition (hint: nothing), they mourn the loss of the carefree life (they at least think) they once had.  I don’t say this to diminish their anguish, but just to say I didn’t have this reaction.  I felt a sense of vindication that I was sick all that time (and not fat, lazy, or depressed).  I embraced my true illness as a long-awaited answer to years and years of questions.  And, above all, I celebrated the fact that diagnosis and proper treatment could get me what I wanted most in life — a child.  I didn’t worry about being sick, I rejoiced at the prospect of finally being well.  At finally being a mother.  And that makes the Synthroid a whole lot easier to swallow every morning.

With each diagnosis that came, I also had built in support and recognition from those around me that something life-changing was happening to me.  I don’t mean to sound melodramatic, but you really can’t underestimate the importance of having someone simply say to you, “I’m sorry this is happening” and “Let me know if I can help.”  The validation of those sentences is ten-fold when they come from your doctors.  Though I, like many, had a difficult time finding a good endocrinologist, once I found one, I was so very lucky to have her on the case.  She discussed my options, she listened to my symptoms, and she treated me as an intellectual equal.  She reinforced to me that I was more than a lab value, and that the best way I could ensure my future health an happiness was to be actively involved in my thyroid care now and in the future.  Put simply, she cared.  The most important way she demonstrated her concern was by being a thoroughly competent medical professional, not by relying on flashy things and attempting to establish an awkward pseudo-friendship.  I didn’t care that her office was in the world’s grungiest medical plaza, that it’s walls were a color of purple that only the 1980s could love, and that she wasn’t remotely warm and cuddly.  She knew her stuff, she answered my questions, she acknowledged my illness.

The infertility business model is different.  Patient care frequently takes a back seat to waiting room aesthetics, fertility yoga, and, in my case, a handsy doc that has hugged me all of the two times I’ve ever met him.  This is market-driven health care at it’s finest, folks.  Take a stroll through your neighborhood fertility clinic sometime.  Just don’t bump the rare hybrid orchids or the Keurig on your way out.

Today’s baseline was a perfect example of what I’m talking about.  I woke with a grimace smile on my face to my alarm’s fucking obnoxious gentle buzz at 5am.  Showered and I’m so not fucking shaved by 6am, for departure north by 6:05.  Arrival to the clinic promptly at 7:05 in time to do my post-drive tinkle and check in for my 7:15 appointment.  Ah, routines, you’re amazing.

As always I was greeted by the far too chipper receptionist.  I honestly don’t think anyone has ever told her where she works.  I can’t allow myself to believe that someone working at an infertility clinic thinks it’s kosher to start the damn early morning off with, “And how are you this fine morning?”  Well, no, there was that time she asked the poor man next to me whether he “had it with him” or needed to “make it here.”  I guess she knows a little bit about what she’s there for.  She must just be totally clueless with the emotions part of the gig.  I mean, how else could someone in good faith (I shit you not!) say to me this morning, “Oh, you’re baselining!  So exciting!”  (Yes, super fucking exciting.  I’m bleeding like a stuck pig, my stomach is the color of gangrene, and I just got another negative pregnancy test.  It’s the most exciting ever!)

Awkward interactions complete, I assumed my RockingChairofDoom™ position and waited.  And waited.  And waited.  I always have a chip on my shoulder when I’m in the RE waiting room.  Not because I’m there, not because I’m waiting, but usually just because I can’t fucking stand how put together and calm all the rest of the IFers look.  Their perfectly quaffed hair, combined with the ski chalet decor of the waiting room, always makes me feel like I went into the totally wrong department store.  I mean, I like L.L. Bean and all, but that shit was reserved for Christmas presents in my house growing up.  I certainly never expected to be sitting in a waiting room that looked like a Bean catalog cover surrounded by America’s Next Top Infertile Models.  It gives fluffy PCOS me a complex.  And, when said late-arriving models get taken back for their probings again and again before me, it doesn’t help matters.  At 7:35 I asked what had happened to my 7:15 appointment.  Not only was this extra dose of quality time with chipper receptionist exactly what I wanted today, but so too was the response of, “Oh, you’re still here?”  Yup.  I mean, I know I’m 5’4″ and easily missed compared to the Norwegian goddesses surrounding me, but YES I’M STILL FUCKING HERE!

You see, in order to keep up appearances my fertility spa clinic only uses e-medical records.  I check in, swipe my credit card, sign my life away, receive an emailed receipt, and Ms. Chipper ticks a box that sends my chart to the nurses.  I’m starting to think she knows I secretly despise her.  Because, my box was left unticked.  So, for the fourth time in six months they “forgot” about me.  At least this time (unlike at my first ever consult with them) they didn’t leave me stewing in an over-crowded waiting room as the world’s most obnoxious angelic toddler repeatedly kicked me.  Progress?

Unsurprisingly, the nurse that took my blood pressure let out an audible gasp when she saw it.  I didn’t look.  I could tell that the throbbing vein sticking out of my neck was not a good sign.

When the latest in the revolving door of NPs finally entered I wasn’t in the mood.  I just wanted her to stick it in and be done with me.  So when the conversation started off with the very predictable, “So what type of cycle are we doing?” the rage was blinding.  Think, for a moment, about the last time you went to a “regular” doctor.  Or, better yet, the last time you went to the ER.  Maybe you had a high fever, maybe you were missing half your finger from an awkward encounter with a circular saw, maybe you were seeking pain meds.  (I mean, who am I to judge?  We all have our reasons.  If you are a drug addict and are currently knocked up with an unwanted child, though, please give me a ring.)  So, at this last visit, was the first thing the doctor asked you, “How are we going to treat you today?”  You mean they didn’t start the conversation with, “How do you think I should reattach your finger?”  Wait, they actually used their medical judgement to diagnose and treat you in the way they thought was best based on their years and years of medical training?  Stop fucking with me!

Fertility clinics are like bridal stores.  Just another blip along the long line of experiences that form part of any modern woman’s life of conspicuous consumption.  But, instead of asking for beads or lace, you place your request to try on a catheter or ramp up the gonadotropins.  Do you have these in blue… errr, I mean a 150IU dose?  Would it be too showy to do back to back IUIs?  At best NPs act like gal-pal besties.  Loosely offering their opinions, but never daring to contradict you if you have your mind all set.  And you know what?  I hate that.  (And, I also despise shopping.)

So I answered the usual questions.  You know, the questions that are all already answered in my medical charts.  Yes, I have taken Gonal-F and Lupron before.  Yes, I’d like to do Lovenox and Intralipids again.  No, my husband has absolutely no problems with his sperm (and yes, this is why I believe an IUI is a total waste of time and expense).  Yes, I’ve been pregnant three times before from “Just sex,” and, no, I don’t have any living children.  No, I do not have IVF coverage, but I’d like to talk ab… yes, I understand you can’t answer medical questions.  And, yes, I do suppose I sound a little agitated.  I wonder why?  I picked out an IUI in a lovely shade of bitter, and started the long drive home to a job I was now quite late for.

Infertility is a CDC-recognized disease, yet when I go to the one place where that should be front and center – my doctor’s office – that’s not what I’m greeted with.  I’m welcomed by a reading wall, whale sounds over Bose speakers, free coffee (I shouldn’t drink), and a back entrance that sells spa robes and slippers.  (At least, I have a visceral memory of the presence of white fluffy slippers on smooth river stones.  The only time I saw the back entrance was when I was being wheeled out in a wheelchair and heavily sedated after my D&C.)  The rest of the world diminishes my pain by telling me to relax, by suggesting a vacation, by asking if we’re “doing it right.”  I look to my doctor to validate my medical condition, to acknowledge it’s presence, to propose an appropriate treatment.  But I’m left all alone.  I both call the shots and administer the shots.  It’s taking its toll.

And this is why my failing stamina is more likely to result in dashing all hopes of parenthood than is medical reality.  Well, let’s be truthful.  In reality, I’m getting almost no medical advice anyway.

7 thoughts on “I want to be *really* sick

  1. I am so sorry that this is the experience you’ve had with your RE and his/her office. I’d have to say that my experience was completely different (though i HAVE heard of many people with similar experiences as you). Yes it was the most “spa like” doctor’s office I’ve ever been in, but they knew their shit. Hands down, knew their shit. (I was at CCRM in Denver). I think they just have a reputation to uphold as the best of the best, and luckily I got to reap the benefits of that. Worth every minute of the 6hr drive to get there.

    Not sure if it helps or anything, but my husband’s SA was “exceptional/amazing/one of the best they’ve seen” – blah blah blah (cue his head exploding with pride) every time he had one done and I had “unexplained IF with probably lean PCOS” and yet it took a medicated IUI cycle for us to get pregnant. You never know lady!! I’m still hoping this IUI is the key for you!

    • Thanks!

      I think I’d have more hope for the IUIs if I hadn’t conceived three times from intercourse. Sperm meeting egg just isn’t our problem. Getting and keeping me pregnant is.

      I think that’s part of my problem with this clinic — they are a “well known” practice. I get the “keeping up appearances” idea, but that needs to be backed up with decent medical advice and actual interactions with the “specialists” you are paying huge money to see. That just isn’t what happens there.

      How did you possibly manage a 6 hour drive? My 1 hour is killing me. I’d love to cycle with my RI (who is 6 hours away) but there is just no way I could do it without taking loads of time off of work which I just cannot do. (Not if I want to stay employed and keep my health insurance, that is!)

  2. I know nothing I can say will make this pain better. Just know from a girl that’s been there that I am here to listen to you. I see your pain and it makes me remember. I was totally the unkempt barely dragged her butt out of bed chick in the waiting room 🙂 I stopped shaving for the doctor after the first IVF. I figured we are paying them enough to deal with it! IF is a big business in part because insurance doesn’t cover it. They can charge whatever they want. The big NYC clinic we went to charged $9200 up front for just bloodwork and u/s leading up to IVF ER and nothing beyond. If you did your beta with them that was another $500 a pop. WTF!?! It is sad people are being priced out even having the possibility of having children 🙁 Take care. You are in my thoughts.

    • Thanks. Honestly, from the bottom of my heart, thanks…

      I just hate that this clinic is really our only reasonable option. I would feel much more comfortable cycling with our RI (even given the HUGE cost), but at a 6 hour drive each way it’s just not feasible.

      And the being priced out? That’s the one moment when my blood starts to boil and my anonymous Internet news-site commenting kicks in in full form. The moment when idiots on the Internet start defending the position that IVF is a lifestyle choice and if you can’t afford it you shouldn’t be allowed to procreate. Because, you know, “raising kids is expensive.” No shit. I’d love to be sent straight to poverty raising my kids, but in order to do that I have to have them first. It’s infuriating.

  3. Whenever you talk about your clinic, I’m floored…and not in a good way. The spa aspect of it is so odd to me! My current RE’s office could maybe be described as posh, but definitely not to this level.

    My favorite RE in our area does consults with couples in a room with a leaky, stained sink, sitting at a table that looks like it should be in a high school lunch room…but he’s excellent. Interesting, huh?

    • Yea, I guess I should fess up that there is a bit of a back story here. We moved this past summer and, as a result, moved clinics as well. While I by no means loved the old clinic, it was better in many respects than our current one. And, by “better” I generally mean that it was about at the level of the one you described here — over-crowded, outdated waiting room, surly office staff, strict “no kids in the waiting room” policy. So, yea, I guess I do judge my clinics by these “soft” things.

      It boggles my mind, really. One of the reasons I felt comfortable accepting this job and moving here was because this clinic was so highly regarded by many women I’ve met online in the IF world. It’s one of the “big name” clinics. Yet, I hate every moment I spend there…

  4. Pingback: My silly quest for normal | Not when, but IF

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