Laughed Out of the Room

OK, maybe this was ridiculous, but I was FREAKING OUT that I might have lupus.  So I didn't even ask my RE and took my health into my own hands.  I don't ask for permission for anything anymore.  I booked an appointment with a rheumatologist.  I got in five days later (that's today).  After a 20 min drive, and I was meeting with a world expert in lupus on a high floor in a beautiful building with free coffee.  God Bless America.

The whole transaction took maybe 15 minutes.  I printed out my test results.  I told her my RE said I tested positive for lupus after several miscarriages.  My mom has fibromyalgia and also tested positive for lupus, but no one has ever had lupus.  (I left out the rest of my complicated reproductive history.)  She seemed unimpressed, but asked me about 50 questions about pain, headaches, tiredness, my skin on a touchscreen ipad.  No.  No.  No.  No.  Then she actually laughed in my face.  It was the best medical reaction I have had in a long time.  She laughed in my face!!!  Yay!!!!

I don't have lupus.  I don't even have arthritis.  I don't have any meaningful inflammatory conditions.  The doctor said she was really sorry about the miscarriages but this wasn't why.  And if my dumbass OB was really worried about inflammation, I should get an allergy test.  OBs don't know how to read the tests they order.   Ouch.  Hadn't thought of an allergy test.

The doctor seemed pretty pissed I was wasting her time.  YAY!!  She said the test meant nothing, I am fine.  I think I apologized or something, but I was smiling.

I've never been so glad someone laughed in my face.  I said bye and that I hoped that I would never see her again.  $4 parking, and $128 later (still below my deductible), a world expert told me I am fine.  I do not have lupus.

I Can't Have Lupus

I have two new blood draws scheduled, and the doctor wants to send the results to some other doctor.  My IVF may or may not be on hold.  I will know in a few days, lupron is supposed to start next week.

I stopped googling the scary part about lupus, you know miscarriages and chronic pain and fatigue, and I start googling the symptoms and diagnosis, which are pretty much the same thing because there's no lab test for lupus.  So I'm not sure why I'm still getting a bunch of blood tests.  I've never really had any of the major symptoms of lupus -- fatigue, headaches, joint stiffness, butterfly rash.

But I have had some other the other symptom, like that bumpy heat rash I get all the time that I've never seen anyone else have.  Swollen joints.  Nose sore, mouth sores.  Muscles tired when I'm tired.

I'm psyching myself out.  Everyone's legs get tired when they are tired right?  Everyone gets a heat rash on the beach right?  Or if they wear a metal necklace outside in Las Vegas in summer.  Of course I don't have freaking lupus?  How can you have lupus without the main symptoms?  This is fucking ridiculous.  The whole thing is ridiculous.

Isn't it bad enough I've lost four embryos?  That one almost killed me?  That my dad has cancer.  That my sister in law has the first grandbaby with my due date.  That I feel like a constant failure and fraud.  That nobody gives a shit about my pathetic struggle.  That all my friends have had two babies already.  That I pushed my marriage to the brink with my failure and my insistence on five figures worth of medical intervention.  Do I really need a chronic, painful, uncurable condition on top of this?

Surely my sins are not so bad as to make me live in this constant state of mourning with everyone else's children.  And then to live in this two week wait for a diagnosis of a chronic illness.  God.  This two week wait is even worse.

Something Snapped

This last WTF appointment contained a caveat about genetics.  The doctor thinks we should get the embryos tested at CCRM.  At the time, that seemed like a big blow, so I just left and went to the beach.  Rented a house, went to some friends, drank myself silly.  Just left for two weeks, and worked on the beach. Took my birth control pills.  Last call, right?

And then while I was gone, it got worse.  I guess I tested positive for lupus antibodies?   Lupus.

My initial Googlings about lupus FREAKED.ME.OUT.  Miscarriages second trimester.  Miscarriages.  High risk pregnancy.

And then I kept reading.  No way to diagnose.  So complex.  So many drugs.  I give up.  I quit reading about lupus.  I quit reading about genetic testing.  I'm totally overwhelmed.  Maybe it's my lupus.

So now I have another doctor appointment.  Maybe a lot more doctors.  Welcome to the RPL club.

Truth Will Set You Free

I went to a baby shower I could not skip last week.   Baby showers are so triggering, and someone spent a week on Pinterest for this one.  Flowers in tiny baby rainboots.  Multiple crossword puzzles.   Number guessing.  Prizes.  Glass containers of pink custom popcorn.  I had a few drinks.  And then a few more.

A friend of a friend I see maybe 5-6 times a year came up to me.  She had a six month old baby on her hip.  Of course she did.  And she asked it.  A throwaway meaningless question at an event with a bunch of people who don't know each other.  "So when are you guys going to have a baby?"

I snapped.  Maybe it was wrong.

"Well, we are zero for four, so you tell me."  *pause*  "Did you see so and so's car!  He must have gotten a big bonus!"

She cared a lot about that car all of a sudden.  And so we talked about the car.

This strategy was risky, obviously.  If I happened to pick someone who did IVF, or someone who froze their eggs before chemo, or just someone nosy, there is going to be some followup.  I had to be ready to talk about all of it, which I was.  I'm just so over all of this.  It feels like discussing someone else's life now.  Going rogue with honesty is asking for this feedback, which luckily I did not get.

I also opened myself up to gossip.  At this point I don't care about that either.  Anyone who gave a shit about me as a person would have already known about at least one of the four.  I timeshifted this post because I was worried about backlash (especially for my sperm donor!!!).  I was really worried people might ask him about it, and I know that would be awkward for him.  But it seems like no one said shit.  Maybe if you ask a rude question, you keep the TMI answer to yourself.  Maybe she thought it was a joke!??!

I feel surprisingly free.

A New Diagnosis: RPL

My mood is completely somewhere else for IVF #2.  It's almost like I can't be bothered.  The women in the waiting room were very young, very blonde, and had nice nails.  You could feel that tension where if you make eye contact they will start crying.  A lady in a niqab came out of the payment area sobbing.  I know that feeling.  The last time I was at the RE office was for my March abortion.  Big contrast to my current energy, which is more like an observer.  I'm barely there. 

First step was hysteroscopy #3. My cervix doesn't like being messed with and the saline is some kind of torture.  If my sperm donor had to do this, we would never get pregnant. I should have gotten the valium, but I had no one to drive me.  More accurately, I did not want anyone to drive me.  I just wanted to be alone.  I thought that was the worst part, it wasn't.

Then came the doctor consult.  I got a new, fun diagnosis:  RPL.  Recurrent pregnancy loss.  My IVF chemical pregnancy with two perfect embryos, and then a spontaneous miscarriage two months later are a statistical improbability.  No shit.  I do everything 1%, I guess.

I zoned out at this point.  I didn't really respond or say much at all.  I wasn't even upset.  He said there were two things to look into: genetics (that's another post) and something about looking into a uterine abnormality, even though all the reports said perfect.  *shrug*  So now he wants the tape of my HSG from three years ago.  Luckily I made them give me a copy before I left.  I REALLY should have gotten the valium for that one.

Just one more thing I can't control.  I'd take my old diagnosis "secondary infertility: tubal cause" over RPL any day.  I regret every day that I carry the scars of RPL, because there is no way to come out of RPL unchanged.

Insurance Good News

There is so much to digest from my two hour doctor's office extravaganza, it is going to take a couple days to sink in, and then couple posts.

I'll start with the good news.  News so good it had me crying on the phone with my mom in the car.  Good news!  The insurance picked up 100% of the cost, no copays even, once I pass my deductible ($1,500 individual/$3,000 family).  WOW.

The kicker is that this is an Obamacare plan from healthcare.gov.  That's right. I'm self-employed, live in a state with no coverage at all for infertility, and this is literally an Obamacare plan.  Not even the most expensive one, it's about $1,200 for the two of us per month.  Wow.

That is even better than my coverage in a mandatory coverage state for a plan that I kept on COBRA for over $2K/month.  All I had to do was have a tube surgically removed to qualify.  Lucky me.  Oh, and the baby in the tube too.

We have to pay $1,500 for cryo, like last time.  There's a new option to pay $3,500 to have the embryos genetically tested at CCRM, also not covered.  Those are the only out of pocket costs.  Wow.  I made a new post for the costs of IVF Cycle #2, this time with my new insurance.

Meh About Round #2

Doctor appointment Thursday for final checks to start a new fresh round.  I'm pretty calm, really.  I know logistically what is about to happen.  I have no control over that, and I'm not scared of needles anymore.

Mentally, maybe  I don't care, or I've checked out, but it has no power over me this time.  This time, it feels like getting new glasses, really annoying glasses that require fifteen office visits, a bunch of vagina checks, and a bunch of blood draws.  Just another errand, and I'll have to wait there forever.  I think I have already decided it will fail.  I am a planner type, not that you would know that because I so very rarely execute those plans.  But this time, I am expecting to end up at Plan M.  We're already at Plan G or something.

I have been too busy at work to sneeze, not to mention worry about IVF.  That helps.  I've been working out two hours a day.   I am doing something like dance/Zumba/spin in the morning, and yoga/pilates in the evening.  I am literally exhausting my body so I can't think about it.

Emotionally, everything I had is gone to Hermione who is magically pregnant with my due date with the first grandbaby.  That is all over Facebook.  That is all the family is talking about.  I think that took all the fucks I have to give.  I don't have any more emotions left for anyone's baby after mine died and hers lived.  Including mine, I'm pretty indifferent to that now too.

After my miscarriage, I heard shit from any of them.  I'm not saying I expected daily status checks, but a text might have been nice.  But why coddle a silly miscarriage when there is a real baby?  My position has been made loud and clear.

I think somewhere along the way I have made peace that this might never happen for me.  This is the end of the line for me.  I will try these fresh rounds.  Maybe take some out of the freezer.  No more after that.  I am not so stupid as to keep chasing death.  I am not overwhelmed at the prospect that I might never have a child.  It feels like death and suffering is the hand I have been dealt.  The hand I live with every day.   The more I fight it, the more I suffer.  So, here we go.  Round #2.