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. 

 

 

 

 

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15 thoughts on “Grieving, Testing and Keeping Afloat

  1. Thank you for sharing such a detailed update. Reading this post, I almost felt a sense of relief for you. I have the sense that you are doing more then just getting by, almost as though you’ve started to turn a corner. You seem to have a bit better of a plan for your next steps, both in-terms of medical testing but also for getting your mojo back.
    With our 5 miscarriages, I’ve learned just how hard this is. For me, I find the time waiting for the death of the baby and the actual miscarriage (which undoubtedly lasts at least a few weeks, but can last up to 5 or 6 weeks) and the few weeks after the most challenging. I find that’s when I’m the most stuck in grief and pain. I tend to bounce back once the miscarriage is done, and I have my body back. My heart and soul takes a bit longer to start to return, but I always come around (although, I know my heart and soul will never be what it was before – this experience has forever changed me).
    Anyways, as always wishing you all the best as you continue to work through your recovery and next steps.

    • Thank YOU for sharing your experience here. One thing I think we can all sadly say with certainty is that we are not the people we were when we began our journeys to grow a family. That may not be all bad, but it certainly is another something I’m grieving – along with the ways in which this impacts my parenting in good ways and not so great but the grief is that our losses seem to shake every part of our lives, every.freaking.day. And that’s tough to bear.

      I think you’re right, I am turning a corner. I’m still a little too lost to know what corner it was or in which direction I’m headed now, but I’m okay with coasting and just doing my best to let no more rocks into the raft (and maybe to pitch some out).

      Thank you for the wishes – always welcome and deeply appreciated. I’m sending good wishes back your way as you sort out your messy life, too. 😉

  2. wow. That is a LOT to be considering. I hope that you find ways to toss those rocks out of the boat one at a time. I’m sure some are heavier than others to heave over the side. Also, we paid out-of-pocket for a DNA fragmentation test for my husband. If you want the info of the lab we used (it was $499 exactly) feel free to get in touch.

    • Thank you so much, I really appreciate that. Was $499 including shipping or did you not have to deal with the shipping and handling piece?

      Today’s results have so totally knocked the wind out of me, I feel like grieving all over again. At least some of our losses could almost certainly have been avoided had my doctor listened to me earlier about my immune system being on red alert… So sad.

      • $499 included everything. The shipping was the most expensive part because they FedEx this crazy, freezer mushroom case thingy. Check out SCSA Diagnostics – looks like it’s $450 for US patients and you can do it even without a doctor referral. Catching up on your other post now…

  3. I’m so glad you were able to get in to see the grief counselor and your regular doctor for referrals and tests. It sounds like it has been quite an emotional week going over everything, but also a necessary step on the path to healing and moving forward. I hope you find the answers you need hon. You’ve been through so much and you’ve pushed forward after each loss, it’s no wonder you’re feeling it all now that you’ve taken this much needed break. I know it’s hard to take a break, but I’m glad you’re pausing right now to reflect and heal. As always hon, you are constantly in my thoughts and prayers. Hugs hon.

      • Oh hon, I’m so sorry! I just read your latest post. I know this is scary, but please don’t give up. You did these tests to find out what is going on, and now that you have, there has to be something your doctor can do to treat this. And if not your GP, maybe you can send the results to your RE and he’ll have some solutions? Praying for quick and easy solutions! Sending you the biggest hug ever!

        • Thank you. Her solution yesterday if we determined it was an immune issue (why they don’t believe us when we say we are certain there is some immune issue going on is beyond me – we know our bodies, right?) would be to Rx steroids but that cannot be a long-term solution and it does not address why this is even happening. I’m scared it’s something in my workplace to be honest (someone else has had to move to another office building after she developed a severe rash after being here several months and the rash cleared up after she moved) and I’ve only had these symptoms and the 6 losses after our little one since I’ve been at this office. Maybe I sound crazy now?

          Thank you for the hug. Ugh… I know this is a step, it’s just so emotionally loaded for me knowing this should have, could have been assessed before and maybe now I’d be holding the baby we lost at 10 weeks last Sept. or I’d be pregnant with one of the 3 pregnancies we’ve had since then. All this is so hard on the heart.

        • You don’t sound crazy at all hon. I’m actually shocked that OHS hasn’t come in and done an investigation since this co-worker clearly had an allergic reaction to something in the environment there. Is it possible to request a transfer to a different location like she did?

          I know hon, it’s just so heart breaking, but you can’t do this to yourself. You didn’t know and you have no way of knowing for sure what caused those other losses. Ugh! I know this advice is so much easier to say than actually do. I’m so very sorry for this outcome.

        • Thank you. You’re right. Nothing good comes of the what-ifs but it’s tough to block them out, isn’t it? Time for a deep breath and some courage to press on. Tomorrow is another day…

        • It really is hard to block out the what-ifs. Sometimes I wish we could wipe our memories so we wouldn’t have all these questions in our heads, but then the good memories would be lost along with the bad. Selective memory loss, on the other hand, would be something! Hope today is a better day hon.

  4. Pingback: (One of) the Trouble(s) with a Public Health Care System | spiritbabycomehome

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