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.

43 thoughts on “Who Am I Kidding?

  1. Wow. You have a lot going on! I’m glad you contacted the counselor you saw and I hope you get some help and support that way. You are certainly not alone. ❤ Many hugs to you!

  2. Hey chicky, I feel you–last year in my “panic” I went to SIRM and shelled out at least $1500 for testing, which was premature and inconclusive (found I have slightly elevated NK cells, BFD). I had the BIG immunology panel done at a Rheumatologist (like 20 viles of blood) because given my high ANA’s there was genuine concern that I may have Lupus–so that was paid by insurance. To make matters worse (beyond miscarriage & thinking you might have Lupus *and* Ulcerative Colitis) we were financially struggling last year and my husband thought I was crazy for going to docs & spending $$$ on tests, so we fought and it was AWFUL.
    But…I’m glad I pushed for the testing, because I needed to KNOW going forward that I had done everything in my power to prevent another miscarriage, if indeed, my own body was attacking the embryo. I felt like a murderer, and needed to be acquitted.
    Dunno if this helps, except to say that on many levels, I understand how hard these choices are–to see the RI, to do the testing, to follow the protocol…to lose the baby and blame yourself. *hugs* XOXO

    • Oh, MLACS, I’m so glad to hear from you. I’m sorry you’re in a bad place right now, too.

      Thank you for recounting your testing experience and reasons, that’s really helpful for me in terms of perspective. In my gut I’m still leaning toward doing another cycle without testing but I ordered the testing kit (ordering it is free, the actual blood draws and testing will cost me over $2K and that’s with no RI to interpret the results for me though I’d send them to my current RE). Before I make a final decision I’m going to write my RE directly and explain my thoughts and ask if he’ll tweak his proposed protocol to include Lovenox or extend the time I’m taking the steroid. If he’s willing to do both or either I may skip the testing. I don’t think I’d regret it but I’m going to sit on making a final decision for a little while. The RE’ s holiday calendar will likely mean no cycle for me in August anyway so I feel like I’ve got time now… But you’re right, I don’t want to lose the baby/ies and blame myself. Crap, it’s just so complicated. I want to ostrich right now, honestly.

      • Well yeah, if they’d have put me on a “prophylactic” immune protocol I would likely have skipped (most of) the tests. The only thing nagging would be is it an *alloimmune* issue (you rejecting your husband’s DNA) but that seems unlikely given that you already have a child together. Are you still thinking about doing Intralipids? For me, making these decisions was *torture* and I hope your gut tells you what to do and gives you some peace of mind. XOXO

        • The alloimmune issue is nagging me too – more on that another time as it involves some disclosure I’m not sure I want to make public. Yes, I will definately go for the intralipids before and if we get a positive, after transfer. I’m thinking I would like more than 6 days’ worth of steroids if we’re doing the low dose and hoping the RE will agree to that. Also going to ask if he’d consider lovenox if I decide I’d like to include it (he didn’t recommend it when we discussed it last time we spoke). Thanks so much, MLACS. I really value your thoughts and perspective here, my friend.

        • Yep, protocols I’ve seen begin the steroids 2 weeks before transfer to allow time to calm the immune system. Because (I bet you know) taking the steroids *after* pregnancy is confirmed may be too late, if indeed NK cells are already programmed to attack the trophoblast.
          We did DQ Alpha match testing to the tune of $800 and luckily we are not a match for DQ Alpha, and only had a couple other HLA matches (nothing to suggest an alloimmune issue). Supposedly if you have several HLA matches, then the intralipids should help *but* if you are a DQ Alpha match then gestational carrier is the only way to go (according to SIRM).
          I know I have ANA’s (anti nuclear antibodies) but that is the only antibody I’ve tested positive for, and at last blood draw they were “undetectable”. Other antibodies I’ve been tested for are ATA’s (anti thyroid antibodies), which was strangely negative even though it is now neccesary for me to take 100mcg of Synthroid. My blood NK cell count was only slightly elevated–but only a biopsy of the uterine lining can adequately tell you if your NK cells are ‘sabatoging’ implantation, so I think the blood NK cell draw is arbitrary and wish I hadn’t bothered.
          There’s a lot of tests I haven’t done. *If I was you* and decided to use the steroids and intralipids, then the *only* test I would find worth investing in would be the DQ Alpha test, because as I was told that is the one thing that cannot be “fixed”.
          Much love to you. I hope any of this helps. Or if not, tell me and I’ll shut up. XOXO

        • *And btw, the DQ Alpha test by it’s self (without the other 12 HLA matches SIRM ordered) is cheap, like maybe $100, no matter which lab you use (SIRM uses one in California). XO

        • MLACS, I love you, of course I’d never tell you to shut up!

          I really appreciate your thoughts. The treatment for HYrHLA when you have a match because of epigenetic changes after having a full-term (or close enough) pregnancy with a boy is neupogen (at least with two of the RIs I’m aware of). There is some risk of this HLA match because (a) MT is a boy; and (b) a disproportionate number of blasts through IVF are male (meaning the DE blast that my womb presumably destroyed has a greater than 50% chance of having been a boy). I can’t see how we’d be a DQ Alpha match other than HLA-Y given I’ve had a live birth but I have wondered about getting the HLA-Y testing done. The RE did mention surrogacy as our only option if we are facing this and I have told him I’m not going there; it’s just not a viable economic option never mind all of the other reasons I’m not prepared at this point to do it (though if I were 10 years younger maybe I would have considered this).

          Right now my strategy is to ask my doctor, whose test requisitions are 100% insured, if she will test my thyroid again, including anti-thyroid antibodies, and if she’ll do ANA (it wasn’t in my RPL panel last year) and any t- and b-cell testing given what’s happened since she ordered the RPL testing in June 2013 (when we were only at 3 losses, not 8). Armed with knowledge of what she will and won’t do for me, I’m going back to my RE with a “what about this” plan. His proposed prophylactic protocol included intra-lipids before and after transfer and Medrol for I think a week, spanning a period before and slightly after transfer though he was not firm on the dates and said he wanted to review what he’d done last time he used that protocol (successfully) and would give me the details once I followed up with him.

          My request to the RE will be to extend the time I’m on Medrol and ask why he wouldn’t recommend Lovenox (he said he did not see it being a benefit since I don’t have any known clotting issues but I am still on the fence as to whether I want to try it since all of this is a big fat experiment) and if he’d reconsider if I felt strongly about it and showed him research as to why I felt that way (which I don’t at the moment but I’m just holding that out there). I like that he didn’t want me to do estrogen priming or lupron but to let me do the FET naturally again becuase the less drugs to mess up my own balance, the better. I agree with that though of course there is always that anxiety about “what if…would we have…”.

          I hate how stinking hard this all is. I never wanted to be armed with all this knowledge and wish none of us had to create a part- or full-time job for ourselves researching and advocating for western medicine to be our allies in trying to have babies that live to birth and beyond. It’s exhausting and heartbreaking, you’re often so tough about it and I applaud you for that but I am sure that has a huge toll as you’ve alluded to – in so many areas of life. Thank you again for everything, I appreciate you *SO* much.

        • Lol, I have a *wild* imagination and when you had said in relation to alloimmune testing thee are things that you’re “not sure I want to make public”, my thought turned to *maybe miracle toddler was fathered by someone else so DQ Alpha would be a concern*–what can I say? I have a flair for dramatics!
          I’ve heard of Neupogen and even read about it but have amnesia about it now. You could conceivably cover ALL your bases with: intralipds + neupogen + steroids + lovenox + methyl folate. That’s what I would do. And it would piss me off if the doc agreed to all this other sh*t and then hesitated to use lovenox, like, wtf–you cannot be serious–hand me your presciption pad, I will write it and you WILL sign it. XOXO

        • Ha ha! Thanks for the belly laugh, I needed that!

          I haven’t raised neupogen with the RE. Because it looks like we won’t likely get to cycle again until September (my cycle dates and his vacation seem unfortunately aligned to nix August as an option and I’m not ready emotionally to try next month plus I want to give my body time to settle and this one month is not enough time), I feel like I have some time. I don’t want to be sending him 75 e-mails between now and our next FET to give him the idea that I don’t know what I’m talking about and am just panicking. I want to write one consolidated e-mail to start the conversation with a reasoned explanation of what I want to try and get his reasoned opinion on it and recommendations if he doesn’t simply agree. I haven’t looked up the side effects of neupogen. I am leaning toward your idea of just testing the HLA matches and want to see if I can get that done where I am with my GP requisitioning it. I’ve ordered methyl folate now (you can’t get that over the counter where I am, if you can believe that) so I just need him to agree on a couple more tweaks… 😉

        • Good stuff! That’s totally what I would do–I’m always having to practice restraint with my specialists so as not to look like a *nut job* (which I sort of am a nut job so every time I maintain my poker face and don’t go off on tangents I’m like “And the Oscar goes to…ME!”) My current insurance doesn’t want to cover methyl folate supps for me, so I took a page from another blogger’s book (the crooked path to IVF, who has the MTHFR mutation and is now preggo) and ordered Thorne prenatal vitamins off amazon.com, which contain methyl folate & other great stuff. Just FYI, and a month’s worth is only $23. XOXO

        • Thanks. I haven’t been tested for MTHFR and meant to include that in the crap I’m asking my doctor to test for next Tuesday. She will likely be recording “nut job” in my chart but… whatever! I don’t know why ANA and MTHFR are not in the RPL panel here. I figure the methyl folate can’t hurt – when doing IVF I’ve always been told to ramp up the folate so I’ve been on 3-5 mg for a long time. The new RE was in favour but doesn’t seem to get the folate vs folic acid thing so I’m just planning to self-medicate. And I ordered off amazon too – thanks! BTW if you need high D3, they have 5 g capsules on there (and I think some tablets) so you don’t have to pop 5 pills, which I’ve been doing and making the LP do since Dr. Gratitude ramped up both of our D3 intake last week. 🙂

    • My work has been super busy the last few days, which is good for me. I hope it stays busier frankly – when it’s not busy, I feel really out of it and then I dwell on all of our losses and what ifs and… stuff none of us should have to be rehashing in our minds like this. Hugs to you, I know you’re in a weird limbo-ey place, too.

  3. Don’t apologize, I feel you sister. Hell, I had to flee my office yesterday afternoon, specifically because a difficult assignment was being put on my plate that I knew I just couldn’t handle (right after receiving a tear-inducing call from an RE at my clinic that they are “firing me” because my FSH spiked after my last m/c. I will not be allowed to cycle, IVF or IUI). Adding to it, I sense my third loss packing a wallop on my psyche, and I know I need to seek counseling…. but I am also deathly afraid of prematurely being given tools by a well-meaning therapist to help me “give up” this fight and accept my daughter as an only child when I’m just not done fighting. It’s all so headache-inducing, I completely get how you feel disconnected and numb. Sincerely, a recovering former lawyer.

    • I am so sorry about your clinic doing that to you – how crappy and cruel is that? FWIW, my grief counselor has never told us to give up or asked me if I want that, though before we had our one living child she did ask me “what if” to get me thinking about other options but quickly retreated when she saw I was not ready to go there. She’s a repeat loss (pregnancy and living child) survivor too so I think that really helps (and is why I cannot give up my connection to her).

      I wish I could afford to be a former lawyer. Not that I hate my job. I just don’t care about it right now and that makes me feel like crap and wonder why I’m doing it. I’m doing it to pay all of these freaking TTC/ART/RPL testing bills, that’s why!

  4. No apology necessary for a downer post. If anyone gets it, I do. It’s so easy to lose yourself in this cycle of loss and grief and fleeting hope. I wish for you whatever sense of calm and peace you can find.

  5. Someone should do a study on the impacts that fertility treatments have on women’s careers. I know a lot of ladies have to quit their jobs. I’m self-employed and basically ended up with no work because I lost the drive to pursue projects. It’s like having a second job that’s totally consuming of your time and energy.

    • You’re right. It is all-consuming. I’m sorry about you losing your work, do you plan to pick it back up or are you able to enjoy and afford not doing paid work while your beautiful babies are little?

      • I’m in Canada so we get a year mat leave, so even though I was underemployed since like August last year I still get 55% of my income from the last year. It’s not a lot, but along with my husband’s income we’re ok. I have an extra 6 weeks on top of the year bc my baby was critically ill. After that I’m not sure what to do. I have to work in some capacity – I anticipate it being tough to start up my freelancing again. Gah… Tough to think about right now lol

        • I wouldn’t think about it right now. Enjoy where you are while you can, you’ve certainly paid your dues already getting there! I’m so glad you got some financial support to manage the “leave”. Something will come together when you need to deal with it. For now, bask in the sunlight of mothering your wonderful little ones. Thanks for your support.

  6. This could be something you’ve already thought of or had tested years ago, but I went through infertility treatments and had many tests done, and one of these was my thyroid; my t3, t4, and TSH, which were all normal. In the midst of my IVF treatment I went to my regular doc with heart palpitations- I thought I was just stressed and depressed but that I’d better get it checked out. My Pcp ended up making me halt my IVF treatments, even though my tsh was again normal, but he felt nodules on my thyroid, and felt that if I had an underlying thyroid issue, then a pregnancy would not survive. To make a long story not-quite-so-long, I saw an endocrinologist and was found to have Hashimoto’s thyroiditis. My thyroid antibodies were too high. My RE was shocked. My first ivf with my own eggs failed. I read online that eliminating gluten could lower thyroid antibodies, and my endocrinologist said “it can’t hurt, we don’t know if it’ll help,” so I cut out gluten entirely (be careful-it’s in soy sauce, maple syrup- read EVERY label if you are truly cutting out gluten,) and my DE ivf was a success. My thyroid levels are lower than ever. I go next month to get my antibodies checked. Have you ever had thyroid antibodies checked?

    • Thank you. I’ve had thyroid tests done several times (normal always, though between 1 and 2 which was not perfect while I was trying with OE) but I don’t think I’ve ever had thyroid antibodies tested. I see my Dr. Tuesday, I’m going to ask her about that, I appreciate you bringing it up.

  7. I feel you. I’m only half present at work these days too. I feel wonderful if I can get a spurt where I’m engaged for a few hours at once, but those are few and far between. I work in an ALL MALE environment (literally my company has 10 women), but believe it or not, I actually think they are more understanding – or maybe I only think that because they don’t bring it up. Anyway, I am expecting an audit once we submit this year’s taxes. I read on ivf.ca that most (almost all) people get audited after submitting IVF expenses. As for the immune testing, I definitely know we will be doing what we can. When you don’t have any answers, you gotta do what you gotta do. Hope your session with your counsellor goes well. I know I always find counselling to be a benefit (and I probably should go back sooner rather than later).

    • The RE at your new clinic does immune protocol without testing, you are in good stead there unless you want the testing but lots of it is not covered so… I’m really torn. I’m going to ask my GP what she will agree to test so I can reduce my fees for any out-of-pocket immune testing if possible. And I don’t even know if I’ll do the testing, right now I’m leaning toward asking for a slightly more aggressive immune protocol instead and gambling. I just need to figure out if I can live with losing both remaining embryos if that happens. I need to NOT think about this right now. Seeing grief counselor Monday – thank goodness.

      Thanks as always for your support, it means a lot to me. I’m sorry you’re in a weird in-between place, too. The women in my office except my Assistant (who’s lost twins) and a colleague (who went through multiple failed IVF before her only successful pregnancy and living child, too) are even remotely sympathetic and for the lawyers it all comes down to how much money I make them so of course they are not happy about mat leaves, medical leaves, or those of us preoccupied with grief and loss and treatments so we aren’t pulling the weight they think we should. I make them sound awful; they’re not, just typical. If I had to choose a second career over, it would not be the law.

  8. No apologies. We all have those days and the important thing is you have support and can express yourself on your blog!
    I too have been seeing a grief counselor from March. It’s just really helpful. A part of me thinks I never want to stop because a small part of me will always be grieving. Maybe talking it out and having a sounding board and new ideas on how to work with your grief will help you get some of your energy and joie de vivre back.
    ❤ hugs

  9. I’m so sorry hon. Why is it that when it rains, it pours? You don’t need this work stress right now on top of everything else! It just breaks my heart that you’re having such a hard time right now. Praying the grief counselor will help you work through some of this, and I know you know this, but just wanted to reiterate that I’m always here. Always. Big hug.

    • Thank you very much. I have an appointment with the counselor on Monday and my regular doctor on Tuesday (I’m asking her for a letter to deal with the tax audit and if she’ll do any further immune testing – she did the RPL panel and has run my CBCs before but all was normal or a referral to a rheumatologist or an allergist if nothing else). I think I need to start journaling – it’s different than blogging for getting stuff out of me and connecting to my feelings – and hope I can make time for that this weekend if not before. I really don’t want to stay in this place much longer. Sigh….

      So glad for your good news today – going to go check that out!

  10. I’m glad to hear that you contacted your old grief counselor. Hopefully she/he will be able to help in some way. Even if its just allowing you to talk in a safe environment.
    Have you asked your current RE there opinion on the additional tests? If you haven’t, it might be worth running the idea past them. They might give you some good insight on why they aren’t doing the tests themselves? And the other question I’d ask is, what is the benefit to the tests? Obviously peace of mind, but can anything be done based on the results?
    Anyways, just know that we all have our bad days! If you ever need anything, feel free to reach out – you have my email. And in the meantime I will be thinking about you and wishing you the best. 🙂

    • Thank you very much.
      Yes, we asked the RE for his view on testing (well, he volunteered his opinion and I asked some questions) in the same conversation when he offered the prophylactic or “experiment” protocol to treat NKa, essentially assuming that could be an issue. His opinion on the test for NKa is the same as my own – the blood test is not necesarily an indicator of NKa activity in the uterus and therefore is largely a waste of money (from my research that test costs about $1000; it involves several steps, if you want more information I can share it). I never asked about T-helper cells or anti-thyroid antibodies but I plan to ask his opinion about all of our options and about tweaks to his proposed protocol. I’m just waiting to see my doctor here first so I know what she will and won’t agree to or be able to order in terms of testing that’s insured and not out-of-pocket for us.

  11. To My Perfect Breakdown – not sure how your original comment disappeared, but here’s my response.
    First, thank you for your comment and thoughts on options.
    Second, yes, we asked the RE for his view on testing (well, he volunteered his opinion and I asked some questions) in the same conversation when he offered the prophylactic or “experiment” protocol to treat NKa, essentially assuming that could be an issue. His opinion on the test for NKa is the same as my own – the blood test is not necesarily an indicator of NKa activity in the uterus and therefore is largely a waste of money (from my research that test costs about $1000; it involves several steps, if you want more information I can share it). I never asked about T-helper cells or anti-thyroid antibodies but I plan to ask his opinion about all of our options and about tweaks to his proposed protocol. I’m just waiting to see my doctor here first so I know what she will and won’t agree to or be able to order in terms of testing that’s insured and not out-of-pocket for us.
    Finally, the tough part of deciding whether to test or not is wrestling with how we will feel later if we don’t and our next attempt(s) fail, too – could we have prevented those babies from dying inside me? And how will I feel about myself if that happens. But if I think about my acupuncturist’s advice, testing because of that may be following the panic in my chest, not my gut which says to try the prophylactic protocol our RE has proposed and believe my body can and will do this. I don’t know… good think I’ve got some time to calm down and think or feel about it.

  12. We all have our down days especially when we’re dealing with so much. No apologies necessary. This is a lot to think about but you’ve got some really wonderful comments here and it sounds like you have a good plan. I hope the counseling on Monday helps and that you get to journal a bit if only to give your emotions an outlet. Sometimes just getting them out helps to put other things in order. I hope your joy finds it’s way home soon.

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