Thursday, July 30, 2015

So, About My Lupus

OK, so I don't have lupus.  I was so focused on the last cycle, I just let all this go.  But looking this stuff up, it's more serious than I thought.    My bloodwork does have all three beta-2 glycoproteins with waaay solid positives and lupus anticoagulant.  Doing a little wikipedia diagnosing, I am a hair away from diagnosis with antiphospholipid syndrome (APS) aka Hughes's Syndrome in the UK (helpful video here).  I need one more test in a few weeks because my tests aren't far enough apart, and I guess my "gynecological event" was a couple weeks early to meet the diagnostic criteria.  Yea, that event.

This is sounding scary.  Late miscarriages, early babies, bleeding out, and a strokeHome birth is out.  I guess hormonal birth control is out too.  I guess maybe I have a life of autoimmune flares and pain to look forward to?

It's pretty clear I need to get some ducks in a row.  I need a high risk OB, MFM.  I called my friend who almost lost her baby to an incompetent cervix and called her doctor.  I hope they let me in.  I also need a nephrologist, maybe the rest of my life.  I could be on blood thinners and in pain the rest of my life.  I at least have enough information to get more testing.  And I need some advice about the twin risks, given what I know now.

Now I'm freaked out about going back on birth control pills for my FET.  I have to decide tomorrow (Day #2).  If I don't start birth control tomorrow, it would be at least six weeks after my next period for the FET, two weeks of birth control, four weeks of lining.  That's the end of October for my transfer, at the earliest.  By then my SIL Hermione will be giving birth.  On my due date.

And then I start crying.  It's not fair.  I don't want to do any of this.  I didn't want it to be FIVE YEARS LATER until I would get my baby and this much pain and money and suffering.  And everyone else just pops out a baby, no biggie.  After losing a heartbeat, I thought surely it couldn't get any worse, but somehow it just keeps getting worse and worse and worse.

I can't handle any more surprises.  I can't handle any more fucking bad news.


  1. What did you end up deciding to do? That is all insanely frustrating and confusing. Can you get back in to see the Lupus doctor to ask about Hughes?

    1. I don't know yet. I am escalating things. Again.

  2. I am so so so so sorry. :-( You have had to go through more than any one person deserves and it is truly horrible.