About

29 year old mother of none.

DH 32.  TTC#1 since 05/2010.  DX Hashi’s, PCOS, Endometriosis, MTHFR A1298C, and Raynaud’s.  ANA + 3/2013, still under investigation.

PG#1 – suspected ectopic, MTX, 6w2d (11/2011)

PG#2 – CP, 4w2d (05/2012)

PG#3 – Heart stopped, 9w1d (02/2013)

If TTC-speak (trying to conceive speak) ain’t your thing, check out the longer version!

3 thoughts on “About

  1. I’m glad to have come across this today. I left you a message, let me know if you didn’t get it. I love your passion, your strength and your motivation to speak up. We all need to speak up and stop treating infertility like some dirty little secret. Its not dirty, its part of each of our journey, our story and in my opinion has the ability to connect women and have us all Bonded Together for life. I run an online support group called Bonded Together and the name sums it up. I look forward to hearing from you.

  2. Your blog is very informative. I wonder, who was the doctor who flagged the rash on your hips? I’ve had the same rash with 3 chemical pregnancies, and I just had a blood test with a positive ANA. I don’t want to got the expense of IVF before I know understand this more completely, and my doctor says a positive ANA has no bearing on the safety of the pregnancy. Given my health history, my instinct says this isn’t true. I would love to hear your thoughts.
    Thanks!
    Nancy

    • Hi Nancy,

      Simple question; difficult answer.

      Like most things, I think I was ultimately the one that put 2 and 2 together and found the connection between the rash, back pain, miscarriages, and positive ANA. But, some lucky timing came into play as well. My semi-annual check with my endocrinologist’s PA was scheduled for just a few weeks after my third miscarriage and, with little left to lose, I filled him in on what was going on, mentioned the rash and spine pain, and on that evidence he ordered an ANA. I was certain it would be another lost cause as I’d never had an abnormal ANA before, but I’d also, it turned out, never had one drawn while pregnant or having recently miscarried. That was the first test to come back extremely abnormal. It triggered a referral to a rheumatologist within my endo’s network, but his wait list was nearly a year long. I cancelled the appointment, got one much sooner with a more rural/much less qualified local rheumy, wasted my time with her, and went back to the drawing board. It was yet another in a long string of appointments that ended with, “Something might be wrong, but who knows what. Come back when it gets worse.” (I wrote about that appointment here: http://notwhenbutif.com/2013/05/15/consumer-driven-health-care/)

      It wasn’t until almost exactly a year later that I yet again rehashed the issue with a new doctor, this time my new obstetrician. I was pregnant, had been transferred from my RE to a “normal person” OB, and was in a panicked state as the rash started to reemerge. He listed, ordered another full workup, and on the basis of those results diagnosed me with anti-phospholipid syndrome and transferred me to a high risk OB (MFM) practice. They followed me for the rest of my very closely monitored, but ultimately uneventful pregnancy. I also got another referral to a better rheumy who still manages my care. He’s diagnosed undifferentiated spondyloarthritis in addition to the APS and now we wait and watch. Again, equal parts pure luck and demanding certain treatments resulted in my pregnancy even lasting long enough to get these diagnoses. Standard treatment for APS is Lovenox and pulse doses of steroids – I’d demanded both from my RE during our “last ditch” RE in a “can’t hurt, might help” mentality. Wound up we did exactly what we were supposed to, even if we didn’t know that we were supposed to do it!

      The trouble is, you may not know who is right (your gut or your doctor) until after you’ve pursued every option and seen what (if anything) works. ANA is a beotch of a test. It tells you a whole lot of nothing, but abnormal results make us psycho all the same. Ultimately, from the vantage point I have now, I don’t regret a single thing we did. Well, maybe I regret how long it took to get here, but that’s really neither here nor there. My MFM thinks we likely didn’t “need” IVF and proper treatment of the APS with Lovenox and, potentially, steroids would have been enough to sustain a pregnancy. Hindsight is 20/20 though. IVF brought us the desperation and finality we needed to be willing to throw the kitchen sink (aka Lovenox and steroids) at the problem, and in that way we wouldn’t be where we are today without IVF. Listen to your gut and leave no regrets… that and a good bit of luck is all the advice I can give!

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