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!

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

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.

4 thoughts on “Happy, sad, mad

  1. I’m sorry and I actually do know what you’re going through. I have a positive ANA, Hashimoto’s thyroiditis, and have MTHFR and other antibodies to myself. Plus I have no tubes because of endometriosis.

    • So sorry to hear of the tubal issues. After my ectopic in 2011 we were told both my tubes were completely blocked proximally. A lap in early 2012 successfully removed the endo adhesions that were responsible and so far they have remained free and clear. Every moment that ticks by, though, leads to more worry of future blockages and other general endo nastiness.

      Were your positive ANAs ever explained by anything, or did they ultimately just chock it up to Hashi’s? That’s the hardest part with this wait, I think. I’m so thoroughly convinced that the rheumatologist’s further work up will uncover nothing and we’ll be in the same exact position save the fact we allowed the endo a few more months to grow back. I’m taking birth control to hopefully help, but it’s frustrating that in the 13 months since my lap we’ve only tried to conceive three times. 🙁

      Thanks for hanging around here with me and sharing your story. I’m excited to follow along in your journey. We have just so much in common!

      • I hope you get an answer, I’m not sure what came first, the positive ANA or the Hashimoto’s thyroiditis. I’m not sure thats the rheumatologist knows either.
        I’m so grateful for the blogging community. Between the endometriosis and infertility, I have “met” some amazing and strong women!

  2. Pingback: When an itch isn’t just an itch… | Not when, but IF

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