Grieving, Testing and Keeping Afloat

The past few weeks – since we found out things did not look promising with our first DE IVF baby in late May – have royally sucked. 

At my appointment with our grief counselor (since pregnancy and loss #1 in 2010/11 – it was how we rang in the new year – ruining that holiday for me forever) yesterday I explained that I am not in crisis (because I know well what that looks and feels like).  But I’m not “me” lately, either.  As my counselor reminded me from the note I sent her, I had “lost my mojo”.

I analogized my sense of who, where and how I am to an inflatable raft (like a dingy but I like the word “raft” better, more Gilligan’s Island-esque) out at sea.  I’m out there, no occupants and no oars.  And the raft is filled with rocks.  There are so many rocks in the raft now that the water is about to breach its outer edge and the whole affair is about to capsize and sink.  It’s as though I can feel a bit of relief when I inhale, which increases my bouyancy, but eventually with each exhale the water comes precariously close to filling the raft and sending us all to the bottom of the sea (we being me and the rocks).  One more rock and… uh oh.  You saw Titanic.  You know how this story ends.

I came to the realization as we spoke yesterday that it’s time to start pitching some of those rocks overboard.  (This should be self-explanatory to all or most of you, but when you’re flat, mojo-less, and lost the obvious can be elusive or just uninteresting, kind of like everything else in life. Hence feeling and being flat.  Mojo-less.)  Great idea!

But how?

Well, I can tell you that the appointment yesterday didn’t leave me with a panacea.  No revelations, either.  It did remind me – our counselor reminded me and I reminded myself – that I have skills, I just need to stay afloat until I can find the energy to start using one or two of them at a time (by “at a time” I mean within the span of the same week, give or take a day or two).  Skills like writing (by hand, in my journal, not blogging – for they are two different forms of healing/expressing/doing/being, at least for me) and making art (which I have not done since May 27, 2014 – the morning of that day specifically, because in the afternoon I got news that shattered my illusion about that pregnancy succeeding) and spending time with our Miracle Toddler. 

The last one is easy – I wish I could do more of that.  The first two are harder, in part because a me without mojo is a perpetually exhausted me who has no drive or desire to do anything beyond what’s absolutely essential to survive and prevent being fired.

All of that to say that at least I have named my place and sense of self in all of this — a lonely, lost-at-sea, rock-filled raft — and I now have a plan for getting out of that place and on with whatever life has to offer.  I don’t know exactly how or when I’ll execute that plan, but as I told our grief counselor, I know one thing from the past 18 months’ descent into hell (or a rock-filled raft lost at sea):  things change.  Not always for the better, not always for the worse, but they always, always change. 

It sounds a bit nihilistic I suppose, but I take some solace in knowing that no matter what, I will not be in this place forever.  I will not be here – wherever here is – forever or even for very long, in all likelihood.  No matter how long it takes me to practice some skills in an effort to leave it or if I never do, I will not be here forever.  Even if I stay in the same geographic place, that place will change.  Because that is how life operates.  To be is to change.  Life is change.  Some good.  Some not so good.  Mostly it just changes, without us really noticing at the time until we open our eyes and find ourselves wondering, as Miracle Toddler would say, “what happened?”

So I know that.  And I also think I know that I am grieving.  I am grieving so many losses, I do not even have words for them all.  Not just our lost babies, but every lost innocence I have suffered on this journey more than four years ago, every hope dashed.  All of it, I am grieving it all.  And so there are no words.  It simply is, as I simply am.  Here, in this place that will not stay the same.  And so it goes.

And now for the “Testing” portion of our program…

I saw my doctor today.  I refused to have her Resident come and speak with me or even sit in on the appointment (I’ve never done this before and it felt really good, I highly recommend it when you’re broaching a painful subject).  The reason for my appointment (they require patients give a reason) was “recurrent pregnancy loss”.  My doc – who has seen me through RPL testing and the pregnancy and birth of our one living child and my recovery from the horrible doctor I fired before her when he heartlessly told me I would in all likelihood miscarry my first pregnancy (which was long fought and hard won – who cares that he proved to be right?) – looked concern as she entered the room and said “Is this happening again?”

She gave me the referral for IVF last Spring and ordered the stat ultrasound when I was sure (and wishing to be wrong) that our baby had died inside of me in September (I was 10 weeks and under her care until a transfer to my OB was scheduled for some 5 or 6 weeks later).  Since then, I have not talked with her about what has happened, though I’ve seen her about other things (including increasingly bad allergic reactions I’ve been having since last summer when I was pregnant with that baby whose heart stopped).  So I told her everything that has happened since September, when I had the D&C.  Three more early losses, including the recent DE IVF chemical pregnancy with a perfect-looking embryo.

I talked to her about the prophylactic-experiment protocol our current RE has proposed; she had raised eyebrows initially when I said this is based on an assumption that some immune system factor is involved though nothing has been diagnosed (surprise, not condemnation) but then she said none of it was troubling to her (steroids, intralipids and even Lovenox, which our RE has actually not proposed and didn’t recommend, though I’m considering asking about it again). To my Dr.’s credit, she (a) admitted she was out of her depth as we discussed immunological testing; and (b) was receptive to trying to come up with some means of being helpful within the confines of what our insurance will cover.

The skinny:

1.  She will set up a referral for me and the LP to see a geneticist – she said this may be a long-shot but it’s the only specialist she knows with authority in our jurisdiction to order the HLA matching tests.  She is hopeful we may be able to get in to see a geneticist by September, but warned that any tests they order could take as long as our karyotype testing took (16 weeks!), so she said we may not want to hold off proceeding to wait for that, although ultimately it was up to us.  I still think it’s worthwhile speaking to someone so I asked her to go ahead with this referral.

2.  She talked about an immunologist but said that they are generally beyond reluctant to dip their toes into infertility or recurrent pregnancy loss waters and believed I would not get much help there apart from perhaps some new allergy patch testing – plus the waiting period is lengthy.  She said rheumatologists would do the testing I’ve already had and in her experience again would be beyond their comfort zone and not likely to go out on a limb where baby-making is involved.

3.  She prescribed Singulaire – again, prophylactically to some extent but also to see if it does reduce the inflammation and allergic reactions I am having, including the allergic conjunctivitis that seems to flare up in my luteal phase of some cycles.

4.  She ordered anti-thyroid antibodies (ATA), thyroid stimulating hormone (TSH), Antinuclear antibodies (ANA)*, and Immunoglobulins (IgG, etc.). 

5.  She cannot requisition sperm DNA integrity testing and wasn’t sure whether the geneticist could do so.

6.  She confirmed my own view of our local RE clinic – mostly useless.

7.  She agreed to write me the letter needed to convince the tax authorities that I didn’t just do IVF last year (or travel to do it) for kicks so I could get some of that money refunded as a tax credit.

About the ANA*, my doc mentioned that a portion of the population test positive for this even when there does not appear to be any actual issue (a false positive, essentially), so she had not included it in my original RPL panel testing in the Spring of 2013.  She decided it was best we test it now just to be inclusive.  I agreed and thanked her for the heads-up about the possible misleading results. 

I had blood drawn today and am now waiting for word on the results.

I feel better.  In part because I got heard (again).  In part because I did not panic and ask for referrals to every specialist and their respective pets.  In part because seeing the grief counselor has helped me feel a little less out-of-control, though the raft is still pretty full of rocks.  And in part because I know we have options I can financially stomach if we decide to do the only outstanding testing I feel kind of strongly about (HLA matching /DQ Alpha)  and the one I wonder about (sperm DNA integrity testing).  

On the latter note, I’ve written e-mail to MI Labs in Chicago again to ask about ordering a kit for the DQ Alpha testing, which will set us back about $500 USD including shipping and handling, and I’m going to ask our RE about possibly doing the sperm DNA integrity testing and how much it would cost if he ordered it (it’s $350 plus the $200 for shipping and handling at MI Labs though if we could do it at the same time as the DQ Alpha shipping maybe we could save on shipping – there’s another question for me to ask my pal Peter at MI Labs!).

So there you have it, my update for the week.  Now I must go, work is on fire and I don’t want to get fired. 

 

 

 

 

Who Am I Kidding?

I am not myself lately.  I have no joie de vivre.  I am not passionate about anything. 

Who am I kidding?

I am depressed. I’ve lost my mojo.  I am flat.  My inner voice is telling me to get help.  So this morning I sent an e-mail to our grief counsellor (the one we met in January 2011 after miscarriage #1 of our now 8 losses).  I asked if she can see me and if not if she can refer me to someone else versed in recurrent pregnancy loss (RPL).

I am way under budget at work for the year to date (so much so I had to speak with my practice group leader about it this week – talk about adding insult to injury).  Part of this is due to a large project file with which I was heavily involved that has gone dormant but a more persistent part is the time away from work I’ve taken for IVF and other assisted reproductive technology (ART) treatments this year and the fact that I’m only half-present on any given day at work unless I’m committed to managing one or more urgent matters (which absorb my attention completely).  I feel ashamed and discouraged and a little hopeless even though my colleagues and practice group leader have been reassuring and patient with me (none of them know about the RPL issues or the ART-related absences from work – I lie and say I’m away on personal business or vacation because… well… that is a whole other post, one I’d rather not dive into today. Suffice to say the law is not as progressive as people make out and legal work environments are not receptive to “women’s troubles”).

Did I mention I am getting audited (self-assessed to be more specific) for claiming our IVF expenses on my taxes last year? Sigh… Of course I am. Why wouldn’t I be?

I am waffling over getting any more immune testing done for RPL. I’ve reached out to and gotten a price list from Dr. Braverman’s clinic in NYC – GASP (we have to pay out of pocket)! It’s looking like we’d pay upward of $3,500 just for testing and a consult.  I found an immunology lab in Chicago, MI Lab, who will do a la carte testing but even there the Implantation Failure Panel costs $2,200 USD plus $200 USD for shipping and handling (they’ve actually given me a price tag of $1860 USD after excluding testing I’ve already had done from their usual panel). I’ve ordered the testing kit just in case, which I expect will take some time to arrive in the mail. Meanwhile, I have an appointment with my regular doctor next week to see what she is and is not willing to do to help.

And what is my gut telling me about the immune testing?  I don’t have a hot clue because I’m numb, depressed, sad, flat… whatever I call it, the bottom line is I am disonnected from my body, my self, me.  And it sucks.

Please accept my apology for the downer post.  Some days are like that, as I am sure most of you know.