Addendum to Last Post

Part of not knowing who I should be mad at now is also still being mad at myself for not having given the clinic my new insurance card earlier.  I don't think it would have made a whole lot of difference, since we only found out it would have to be IVF about 2 weeks before our appointment, and I don't think the RE would have had the finance person request the IVF/PGD auth earlier than the appointment, but maybe it still would have gone a little faster.  And maybe I was just stupid and naive to think that because getting authorization had gone smoothly and quickly once, it would be smooth and quick again (yes, with a different insurance company, but with a company that had treated my coworker right with her IVF and that doesn't have such a bad reputation for denying needed treatment).

I Don't Even Know Anymore Who I'm Supposed to Be Mad At

One thing that I forgot to mention yesterday was that I tried to check with CareFirst and make absolutely sure that the PGD had been requested along with the IVF, as I had been told by the fertility clinic's finance person, hereafter referred to in this blog as Finance Bitch.  (No, I don't usually go around calling people a bitch in anything other than a momentary expression of frustration.  But this woman seriously is.  I'm not expecting her to be all bleeding heart about the subject because she gives almost as much bad news to people as their doctors/whoever calls with beta results, and as a therapist I can see how it would be too hard to get emotionally caught up in every couple.  But by the same token, she does give a lot of bad news, and that warrants an attitude at least a little more considerate than one that says "oh well, sucks to be you.")

So anyway, since I was already calling CareFirst to try for the second or third time to find out who was in network for PGD, I asked about the status of the authorization request for the service.  The woman I was on the phone with said that she did not see an approved authorization for it.  I asked about pending/denied authorizations, and she said there was one open request.  I asked specifically what procedures had been requested in that auth, and she said that she couldn't tell me.  I asked to speak to someone who could, and she said that no one could tell me what had been requested, even if they could see the information.  Why, you ask?  Apparently because I'm only the patient.  They're only allowed to discuss that information with the provider, not with the person whose body the procedures would be done on.

Today I come home from a day of work that involved helping others through a loss there that I'm also grieving myself, and I see that I got the denial letter from CareFirst.  It says that authorization has been denied for the procedures of IVF, assisted hatching (a necessary component to the PGD biopsy), and ICSI (intracytoplasmic sperm injection, recommended for us both because of the PGD and because of an extremely minor thing with DH's numbers).  Nowhere there is PGD mentioned.  I really hope that's because that's considered a separate authorization request that is still pending.  Because if it was never requested, I'm going to blow a gasket.  Because it might be Finance Bitch's fault that I won't be starting my first IVF cycle this weekend.

At least the basketball game was good.  My throat hurts from yelling, but my Terps looked good out there, and I was impressed with our 7'1" freshman that started for what I think is the first time tonight.

One Major Answer Acquired!

I was feeling really bitchy and whiny about having to go into work today with no time off at all.  After all, I avoided retail jobs so I wouldn't have to do that shit!  In the end, though, I'm glad I went in today (although I'm also glad I went home a little earlier than planned and took a nap).  Why am I glad I went in?  Because when I opened my work email, I saw a message from the CareFirst lady (not the one I had been dealing with all week, the one I had gotten some answers from back in September).  Now, the amazing thing is, she emailed me back on Saturday.  I could have checked my email from home, but I didn't expect her to email me back after not being able to reach her for days!  She does earn back some of the points she had lost for being impossible to reach by emailing me back on Christmas Eve, whether she celebrates or not.

So, which answer did she give me, out of the many I have been arguing/begging for?  The Out of Pocket Max DOES apply for infertility treatments!!  And unlike when she told me it should back in September, this time she attached a PDF of the 150-page plan booklet AND told me where in there to look!  So now I have a listing of what the exclusions are for the OOP max, and infertility is not on there.  I'll take a copy of that section over to the clinic on Wednesday.  I also need to call/email my nurse tomorrow and check on the status of the letter of medical necessity for the IVF appeal.  And check with CareFirst about who's in network for PDG now that I have a better idea of what companies to ask about.  And get the process started with whoever is in network.

But the important thing is that now I know that I can go ahead with those, secure in the knowledge that the amount we had budgeted and put in the FSA will be enough for anything and everything non-cryo-related.

Coming attractions in this space: Book review of What He Can Expect When She's Not Expecting, by Marc Sedaka.  DH read this a while ago, but I just got around to reading it after DH pulled it out to explain that I wasn't at the top of the Wife Psycho Scale even in the middle of last week.

Wow, That Came Out of Nowhere

I had A Christmas Story on for background while Santa was wrapping presents, and I was just about to be ready to go to bed when one of those SPCA commercials came on.  One of the kittens that they showed reminded me of Kechara when he was a kitten, and I just lost it.  I started sobbing so loudly I woke DH up.  He was sweet about that and hugged me, but I still felt bad for waking him up.  Usually when something reminds me of Kechara, I've been able to smile sadly and keep going, maybe with a tear or two in my eyes, but nothing major.  Not this time.  I don't know if it was because I've been more emotional lately or because it was a kitten looking like him instead of an older cat or what, but the strength of my reaction definitely surprised me.

The Nightmare Continues

For those visiting from ICLW, I'm currently fighting with my insurance to get approval for my IVF #1 with PGD.  I've got a diagnosis of unexplained infertility, but DH and I are both carriers for spinal muscular atrophy.  Yesterday, my authorization request was denied because they don't think I'm infertile since I had a miscarriage in 2011.  The "funny" part of that is that I've never actually been pregnant.

The first thing I learned today is that the request is still denied, despite the fact that they corrected the incorrect information.  Several hours later, I learned that the reason for the denial had changed (which CareFirst didn't bother to tell me).  Now, it's being denied because I hadn't tried IUI first.  Which is confusing the hell out of my RE's office, since they figured they made the case for why we had to go right to IVF in the information they submitted at the same time requesting authorization for the PGD.  Also interesting is the email I have from the CareFirst sales rep assigned to our account, from back in September, when she said that she checked the contract and could not find any language requiring IUI to be tried before IVF.

So now I have to appeal the denial.  The denial letter won't even be processed to be mailed to me for 5-7 business days, but fortunately I was told what I needed to say to start the appeal process before I get the letter.  So I called, and I have an address in Kentucky to send an appeal letter to.  I emailed my nurse to get a letter of medical necessity, and she forwarded it to me RE to do.

To add to the fun, when the finance person at Shady Grove ran my insurance, the report came back that infertility costs don't count towards the Out of Pocket max of $3000.  The email I have from the sales rep says that it does.  At the same time, the sales rep also told me on Monday that there was no preapproval needed for IVF, so now I don't know whether to believe anything she says!

If infertility costs don't count towards the OOP max, then we just plain can't afford to do the IVF cycle at all, probably not at all this year.  But now we have $1500 in DH's FSA for 2012, and without the cycle, I'm not sure if we can use up all of that and avoid losing any.  Probably, since DH and I both wear contacts and are running out, but I'm not sure.

Then again, I'm really not sure of anything right now.

Oh, You Have GOT to be Kidding Me!!

Hey, y'all, check out the email I just got back from the insurance company:

Hi Jessica,
I'm sorry this has taken so long to get information to you. But I just heard from our case management area. They have reviewed a copy of the contract today. The contract states a member must have a documented history of infertility of two years duration. The clinical information provided indicates you had a miscarriage in 2011, and therefore does not meet the criteria outlined in the contract. The request will be denied based on the terms of the contract. Your provider will be notified by phone today and letters will be sent to the provider and you. You may appeal by contacting Member Services.
Again, I'm really sorry for the result of the outcome of your request but you do have the option to appeal.
Thank you for your patience.


It's nice to learn that I had a miscarriage in 2011.  Hell, it's nice to learn that I was pregnant in 2011.  Wouldn't you think that I'd learn that from someone other than my insurance company?!?  I emailed back asking where it was in the clinical information, and I just left my nurse a message as well.

*Headdesk* so many times that I would have splinters in my forehead if my desks were real wood

I Used to LIKE Roller Coasters!!!

So I got a voice mail from my nurse this morning.  My RE had been out yesterday when we were playing phone tag, but she grabbed him this morning and found out that he wants to just do the day 5 biopsy and FET rather than giving us the option of the day 3 biopsy and day 5 transfer.  ARGHHHHHH!!!  I left her a voice mail asking if we can insist on the day 3 biopsy and day 5 transfer, because we really just can't afford the cryo costs.  So at this point, the answer to whether we can insist on the day 3 biopsy and day 5 transfer is also the answer to the question of whether we can go forward with a cycle anytime soon.  Of course, just to make life more fun, it's too late to change the amount that we put in DH's FSA, so we can't raise the amount to be enough to cover cryo, but we also can't decrease it based on not doing IVF at all.  So if the RE continues to insist on the day 5 biopsy plus FET, we may be in the position later in 2012 of deciding whether we want to spend a couple thousand we can't afford on cryo or lose the $1500 that's in his FSA because of not doing a cycle.

Querying the Blogoverse

OK, now that I'm ready to talk about Friday's appointment, I have questions for those who have done PGD.  When I was reading online, I only saw information about PGD done on day 3, with a day 5 transfer.  My RE was talking about that option, but also about doing a biopsy on day 5 and freezing the embryos for later FET.  Did y'all have that option?  Did y'all do day 3 biopsies or day 5?  Did you get more/better embryos to transfer by doing day 5 biopsy?  At this point, we might have to insist on day 3 biopsy and day 5 transfer because our insurance doesn't cover freezing, and we can't afford the cost of freezing, storage, and thawing.  Everything else is covered by insurance, but not that.

I did find out from the insurance company today that there is no waiting for approval for IVF since we're using an in-network clinic.  Now I just need to hear from the case managers at the insurance company about where is in network for PGD and fertility pharmacies, as well as whether a day 5 biopsy and later FET would count as 1 cycle or 2, since apparently insurance companies differ in how they count that.  Since we get three cycles per live birth covered, that is a key question!

Advent Message for Infertiles

The sermon that we had today at church really struck me as important for the infertile community as well as anyone else who is having a tough time with the holidays.  I've seen many people, both infertile and not, saying that the holidays are a hard time this year, partially because of everyone else seeming happy and excited.  The pastor spoke of how many people put on a happy mask while experiencing, in the words of Angela Lansbury, "rivers of pain inside." 

Pastor Kathy pointed out that, while we tend to romanticize the manger and stable, the first Christmas came out of hardship and struggle.  While those of us that have never been able to be pregnant can't really imagine it, Mary's journey by donkey when she was about to pop had to have hurt.  Chances are they didn't get to stay in inns on the way; a blanket roll on the ground was a very real possibility.  Mary didn't have a midwife to help her through the labor, and I'll bet the hay they got to sleep on poked all of them through the coverings they had.  None of it was how Joseph, or even Mary, had imagined it would be, just like none of creating a family is how we thought it would be.  But still, Joseph and Mary made time and space in their hearts for awe and wonder, just as we can in the midst of our own struggles.

This doesn't make Christmas feel more real for me, especially since I'm not sure why I feel separated and there's no definite link to other people being happy when I'm not.  Still, I thought it was an important message and one worth sharing.

Ugh

I guess I should eat something today.  Scratch that.  I know I should eat something today.  But before the appointment it was way too early for my stomach to want food.  I was going to get an Egg McMuffin after the appointment, but then my stomach was in knots.  Then I went to bed again and woke up and still haven't eaten.  I guess I'm hungry.  But damnit, it's so much easier to sit here playing Minesweeper with a cat purring on my lap.

Orange Crushed

Wow, I feel like a fucking idiot.  I didn't give the RE's office my new insurance card ahead of time, so I got into the finance office all excited about starting a cycle on about January 1 with almost perfect timing (if nothing was screwy with the genetic testing people) and found out that insurance companies take 4-6 weeks to approve IVF.

I think it was 20-30 minutes before I stopped crying.  Mostly.

DH was really supportive, telling me I haven't ruined everything and that I didn't know, it's not like I did it on purpose.  I feel so stupid, though.  I should have known.  I should have given them the new card when my insurance changed.  Or gone over there with a copy of the new card when I made the appointment (even though that was still less than 6 weeks from when we wanted to start a cycle, I think it was more than 4).

I called in crazy to work, at least for the morning.  I'm already 3 hours ahead on the pay period anyway, the two clients I had for the morning are ones I can easily reschedule, and I'm just not in a state at the moment to be emotionally present for clients.  I know I will be ok, but I'm not ok right now.  I told my boss I'll decide about the afternoon once I see to what extent a couple hours of kitty therapy (and a nap) help.

Advent is a Time of Waiting

This Christmas season has been a little weird.  Christmas is always my favorite time of year, but even though I've been enjoying my tree and lights and Christmas music, it still hasn't felt quite like Christmas.  I'm not really sure why.  One thing I'm glad of, though, is that I'm together enough this year that Advent sermons about preparing aren't making me fall apart thinking of how I was preparing for nothing to happen.  That's probably some combination of the therapy this spring and the fact that we're actually getting somewhere this winter, even if we don't have anything to show for it yet.  I don't really care to analyze it too deeply, though; I'd rather just sit back and appreciate it.  I guess part of the weird feeling is that I feel like I'm doing a lot of that, sitting back and watching, rather than really being in the middle of things.  I'm not sure why I'm doing it, and there may be many things contributing, but I am.

OK, now that I'm done psychoanalyzing myself (for the moment, at least!), there are a couple of cool things I wanted to share on this, the eve of my next RE appointment.  One of them needs some background info unless you already know me pretty well IRL.  For those who have never met my dad, it pretty much says it all to say that he was a Marine Corps Drill Instructor at Parris Island before I was born and is currently a Command Sergeant Major with the National Guard, in his third deployment.  Although he and my stepmom needed ART to have my sister, he doesn't approve of me doing this blog because private information should stay private.  Because of this, it meant a LOT to open up Facebook on Monday to see a file he had sent me that was his receipt for donating to RESOLVE.

The other thing I wanted to share was a really powerful quote that ScubaGirl had posted:

The English language lacks the words to mourn an absence. For the loss of a parent, grandparent, spouse, child or friend, we have all manner of words and phrases, some helpful some not. Still we are conditioned to say something, even if it is only “I’m sorry for your loss.” But for an absence, for someone who was never there at all, we are wordless to capture that particular emptiness. For those who deeply want children and are denied them, those missing babies hover like silent ephemeral shadows over their lives. Who can describe the feel of a tiny hand that is never held?" ~Laura Bush


For those who stuck with me through the rambling, congratulations!  I'll post another update after the RE appointment tomorrow morning.

Finally Getting Answers!!

I got a call from the RE himself on Wednesday with the results of DH's genetic testing.  DH is a carrier for exactly one thing.  To quote Love Actually, you may have guessed it, but you may not believe it, it's SMA!

So now we get to learn a lot about pre-implantation genetic diagnosis.  The article I just linked to provided some really good information.  We still have a bunch of questions for the RE when we meet with him next Friday, though.  One question that I have for anyone who has needed PGD is how significantly it impacted the number of embryos they still had to transfer/freeze, whether they still had enough.

The biggest impact that the news has on me is that I finally have some sort of answer to the cosmic question of WHY.  Why we had to deal with infertility.  Why we couldn't have our first cycle when we were supposed to.  Why we weren't able to do what so many other people can do so easily.  The question of why is still on the list of questions I have for God when I get a chance to ask him, but it's moved a lot farther down the list.

The Death of Fantasy

There was something else I was going to write about tonight, but plans changed, so instead you'll get that post tomorrow.  The plan changed when I read this post by Keiko Zoll of Hannah Wept, Sarah Laughed.  Here's the part of the post that jumped out at me the most:
  
"I’ve always fantasized about how we would tell our parents we were pregnant. In this perfect fantastical world, we’d time everything perfectly so we could do the big reveal over the winter holidays. I always wanted to have both sets of parents open gifts that said “World’s Best Grandparent” and make the big reveal that way.

It’s not terribly original, but it’s my fantasy....
 
But… [the fantasies have] changed. A lot. There’s no surprise element when I blog publicly about my personal journey. As of right now, I plan to blog about every step of the way. That might change. But for now, that’s the plan.

And Larry and I maintain the kind of relationship with both sets of families that they’ll be in the loop every step of the way as well. When we go for a beta, they’ll know only shortly after we do, because they’ll have been following along because we’ll have shared it all with them anyway."

I very definitely understand the difficulty with the loss of fantasy.  I fantasized about telling parents at Thanksgiving, and then at Christmas.  And then at the next Thanksgiving and the next Christmas.  Like Keiko, I'm open about my blog and our process, so parts of our families will thus know right away.  So I gave up on the idea of any sort of big special reveal.  But I still haven't thrown away the Grandparents' Day cards that I bought for all 4 sets of parents as an announcement.

Waiting for Life to Begin

As I was getting ready to post an update about what's been going on recently, this song from Once on this Island popped into my head.  Technically the song is called "Waiting for Life," but every time the phrase appears in the lyrics it's with the whole phrase that I used as the post title.  Now, I don't know if anyone except possibly Katie is enough of a theater geek to know the show and the song, but I highly recommend checking the whole soundtrack out.

 Especially with how close we were to our first IVF cycle before, and now looking forward to hopefully being able to try again for IVF #1, there's one line that especially jumps out at me: "You get me to rise like a fish to the bait, then tell me to wait.  Well, I'm waiting, waiting for life to begin."

So what specifically am I waiting for at this point?  Well, it's been 2 weeks since the lab got DH's genetic sample, so we should be hearing in the next week whether he's a carrier for SMA like I am or not.  It doesn't really matter at this point if he's a carrier for anything else, since I'm not.  I'm also waiting for our RE appointment on the 16th when we hopefully make plans for the cycle starting in January.  I found out today that I might need to wait till January 15 to be able to access the money for DH's FSA, but that's ok because we wouldn't max out my deductible and need to use that money until after the 15th anyway.

On a more macro level (man, I do sound like a social worker!!), I'm waiting to use the box of meds that, come to think of it, I still need to bring in from outside.  (Since they usually live on my dining table, I had to move them out of the way for Thanksgiving.)  I'm still scared to death of needles, but I just want to get IVF #1 moving!  I'm antsy enough about that that I even want the needles, just to be doing something besides waiting for life to begin.

You Tolerate Me, You Really Tolerate Me!

There's currently an award floating around the ALI blogosphere called the Liebster Award.  Liebster is the German word for "beloved" or "favorite". The award is specifically designed for blogs with 200 followers or less, which I definitely qualify as! 

I've been enjoying seeing blogs that I follow receive the award over the past couple of weeks, as it has helped me to find new blogs that I hadn't found through ICLW.  Earlier this week, I received the award from my (also in real life) friend Katie.  I was really touched by what Katie said when giving me the award:  "I actually went to middle school with Jessie, and through the magic of FB, discovered that she, too, was struggling with infertility.  She is definitely an advocate for the cause, and if you don't already read her blog, you should."  I really try to use this blog to advocate for infertility awareness and funding in addition to it being a place for me to vent, and it feels really good to have that recognized.  Now, enough about me, on to granting the award to others!

Here are the rules to pass this award on:

1. Thank the giver and link back to the blogger who gave it to you.

2. Reveal your top five picks and let them know by leaving a comment on their blog.

3. Copy and paste the award on your blog.

4. Hope that the people you've sent the award to forward it to their five favorite bloggers and keep it going. 

 

Here are the 5 bloggers I would like the pass the award on to:  

1. Jill at High Heels and Huggies - Jill posts great information about stress and worry management and about natural remedies in addition to talking about her own experience, and she's great at posting pick-me-ups!

2. Miles O'Willey at Of Course I'm Expecting, I'm Expecting to Get Knocked Up Any Time Now - I LOVE her sense of humor!!!

3. Kelly at Searching for Serendipity - I came across Kelly's blog thanks to ICLW, and I love her outlook on life and IF, as well as how she words things.

4. Mag at Witty Infertility - This is another that I found through ICLW, and the blog title is accurate. (Although her possible other title of Witty Bullet-Points-Own-Me Infertility would have also fit!)

5. Augusta at All In One Basket - Augusta and I are in the same general career field, so we both get the "fun" of trying to be emotionally present for others when falling apart ourselves.

Check them out!!