Music Monday #4 - Shades of Gray

Well, here's a Music Monday that I know my mom will like!  She very definitely raised my brother and me on the Monkees.  I chose this song tonight for a couple of reasons.  One of them is the passing of JoePa.  This article does a very good job of looking at his situation and emphasizing that for many people this is not a black and white situation and that we cannot effectively be defined as people by one decision or set of decisions.

The other reason I chose this song is the verse about how, "It was easy then to know...how much to protect your heart and how much to care."  That's something I've really had to work on and work out at different times in the infertility process, and it's coming up again as we have the potential to be making progress again.  How much do I protect my heart as we hopefully go into IVF?  I won't really know until I get there, but my natural inclination now is to guard myself.  That sure as hell wasn't my inclination 2 years ago, but it has become my MO.  I'm afraid to care because every time I have in this process, I've been crushed by that.  Typing this reminds me of a Bible verse that was given to me when I was going under anesthesia for the first time and was scared: "For the Lord did not give us a spirit of fear, but of faith, love, and a sound mind." 2 Timothy 1:7.  Unfortunately, though, going in with faith, love, and a sound mind (or as sound as mine ever has been!) led to nothing but heartache, so I have to find the shades of gray that work for me at any given time.

For my mom and any other Monkees fanatics, I'm putting in two videos of the same song.  One is from 97 and actually has all four Monkees together, which is why I'm including it.  The other is from 2011 and shows off Peter both singing a solo and breaking out the French Horn.  Since he always played the lovable fool on the show, it's easy to forget that he was one of the musicians, not one of the actors.

Let the Countdown Begin

The appeal packet was delivered to CareFirst and signed for at 7:46 AM today.  Now they have until February 21 to make a decision.

In other "about damned time" news, our Christmas tree came down tonight thanks to DH.  And the two younger cats are in mourning.

ICLW #5

I'm in a very different place in my process from the last time I actually wrote an ICLW post, two months ago.  At that point, we were waiting for the results of DH's genetic screening, but I didn't really think that it would come back positive.  I figured we would be doing IVF for our first try, but only because we already had the meds and the insurance rep had (falsely) told me we didn't have to do IUI before IVF.

Now, I write this looking back on a month that has left me lucky to still have hair I haven't pulled out.  DH turned out to also be a carrier for spinal muscular atrophy, so we prepared for IVF with PGD, hoping to start our first cycle on 12/31.  On 12/20, the insurance denied the cycle because we didn't count as IF because of having had a miscarriage in the last year.  Funny, since I've never been pg.  Then they denied me because we hadn't tried IUI first.  Never mind that they had approved the PGD and you have to do IVF to get the embryos to test through PGD.

I had to wait 29 days to get the letter of medical necessity that I need for my appeal of the denial.  I got it this past Thursday and mailed the appeal on Friday with signature confirmation.  Tomorrow evening, I'm going to see if it was received yet so I can start counting down the 30 calendar days they have to make a decision.

As far as the PGD, my clinic really wanted to use a lab in California because they don't like the local lab anymore.  The lab in California would have cost us an extra $1000-1500 or so out of pocket and would have taken over 8 weeks to make the probe, so we're insisting that they use the local lab.  My nurse said on Thursday that she's going to put in the referral for that lab, and hopefully that can get going while I wait on the appeal.  The Maryland lab will only take 3 weeks to make the probe once we get whatever samples they need to them. 

I'm really hoping we can start a cycle at the end of March...that would work out nicely timing-wise (if it takes, of course) around stiff that I have going on at different times this year.  I'm still afraid to have hope for actually getting pregnant, but it feels safe to be able to hope for that, since there is a deadline on how long CareFirst has to decide on the appeal and medically there's no reason for the appeal not to work.  Then again, medically, there was no reason for the denial in the first place, so who knows.

Sent

I mailed the appeal today as I was on my way from one office to the other.  I made sure to get signature confirmation on it so that I know just when their 30 days to make a decision starts.

On a side note, why is the Priority Mail flat rate envelope costing less to send than the base rate listed for Priority Mail?

I Have the Letter!!!

FINALLY, after 29 days, I have the letter of medical necessity in my hot little hands.  I hope it's good enough.  I wrote a cover letter for it and copied the supporting documentation, and I'm heading to the post office on my way in to work to overnight it to CareFirst (or whatever will get it there early Monday) since I don't have their fax number and I haven't had a chance to call and get it.  Then they have 30 calendar days to decide on the appeal.

In the meantime, my nurse at the fertility clinic is putting in the referral for the Maryland-based PGD lab.  So they'll get the referral, look at it, and call me to discuss what they need from us to create the probe, and then that takes 3 weeks to create once they get what they need.

WHY do I have to fight so damned hard for what other people have the luxury to take for granted???

Like I said in the last post, this weekend (along with Monday) was a nice interlude where the whole IF thing and the whole fighting-with-insurance-and-the-clinic thing weren't bothering me so much.  It was a good break, but definitely bracketed by a lot of frustration and struggle.

When last we saw Our Heroes, they had just learned the various downsides of the California lab for PGD and were planning to make an appointment to figure out why the heck the RE would be wanting to use that lab.  Our Heroes had also at that point been waiting for 2 1/2 weeks for the medical necessity letter from the clinic to appeal the IVF denial (which I am now comparing to an insurer authorizing bypass surgery without authorizing the opening incision).

Well, we're still waiting for that letter.  The nurse called last Wednesday and said that she was going to follow up because she didn't see the letter in my chart.  I left yet another message for her today because I haven't heard anything.  I'm going to follow my one friend's advice and start calling the doctor instead, leaving messages every day until I get the letter.  I shouldn't have to do that, but nothing gets done if I don't.  Oh, wait, nothing was getting done while I had been calling the nurse every day either. 

I had called to make an appointment to try and get some answers, and got an appointment for the 25th.  Then DH told me that day was bad.  So while I was making calls today, I went to change that appointment.  Best I could get was the second week of February, and it had to be Friday the 10th since the other days that week I will be in a class in the mornings. 

Since I hadn't been getting calls back from the nurse for days at a time, I called the Maryland PGD clinic to try to get some answers.  They can do the testing without a $375 courier fee and without samples from our parents that we pay out of pocket to get tested and without taking 8 weeks to make the probe.  It would take them 3 weeks to make the probe, but that would all be covered in the cost billed to insurance, and 3 weeks is a hell of a lot better than 8 (plus the time to get samples to them from Egypt and several places in the US).  I also found out that this lab and Shady Grove have...differences of opinion...that are why they don't prefer to work with each other anymore.  I was afraid that SG was going to refuse completely to work with them and force me to go to another clinic (which would require 25-30 mile drives in rush hour traffic for monitoring appointments), but my nurse did say when I had caught her last Wednesday that they would work with the lab if people's insurance didn't cover the California lab.  So I'm going to insist that they work with this lab whether they damned well like it or not.  Just as I'm going to have to insist that they do the day 3 biopsy and day 5 transfer if they want my business, since we just can't afford the day 5 biopsy and later FET (especially not after having to spend another $300 on stuff from last plan year now that the insurance stuff from then got straightened out).

So now the plan is to badger the RE till I get my letter, appeal CareFirst's moronic decision, and insist on the RE using the Maryland lab and doing a day 3 biopsy.

And while all this is happening, I've been lapped by yet another person.  Maybe, if I'm lucky, now that I've gotten these posts out (I was going to write most of this last week, but every time I was going to it just seemed like it would take too much energy) I'll be able to concentrate on what I started trying to do 5 hours ago and have to get done before bed.

Music (Tuesday) #3 - Our God (Is Greater)

Sorry this is late, but I got home too late last night to do anything but go straight to bed.

I caught just the end of this song on the radio Friday morning on my way to the airport and cranked it up.  The middle to end has a great rhythm buildup that makes me want to dance and come as close to headbanging as I'm ever likely to.  The beginning is nice, but it's the second part that really lifts my mood and makes the song for me.  I would have posted it to Facebook as soon as I got to the gate, but I barely made the plane.  So I listened to the whole thing a couple times over the weekend and decided to use it for this post.

Over the weekend, I was doing really well and this song felt empowering.  I was having fun with friends I rarely get to see and making new friends.  I was able to talk about the IF without getting upset, and I was even able to talk about IVF matter-of-factly, just as something that had the potential to affect my schedule and what I would do when.  That ended up being a shorter-term respite than I would have liked, but I'll get into that in another post.

Music Monday #2 - Here Comes the Sun

I haven't gone to bed yet, so as far as I'm concerned, it's still Monday, damnit!

The last couple of days have actually been pretty good, despite the looming issues of the IVF authorization, the PGD clinic issue, and a lingering insurance/billing issue from the last plan year.  Friday night, I got to visit some friends at DH's curling club and then played fun music and watched my Lady Terps come back from 20 points down to beat Georgia Tech.  Saturday, an APO thing that I expected to take about 6 hours was done in 4, and I then got a great deal at WalMart on something for my office and then baked 3 batches of cookies.  Sunday I got a lot of Christmas un-decorating done and also had a great band rehearsal.  Today I got a lot of office organizing done (mostly at work, but some at home), figured out where the above insurance mistake was made, and then came home and made a healthy version of eggplant parmesan.  Little things, overall, but nice.

The real highlights, though, are that twice in the past day or so I've seen that my work and abilities are recognized and valued.  Yesterday afternoon, I got an email asking if I was still interested in helping out with logistics for a quizbowl tournament.  In a follow up email, I found out that he wants to put me in charge of a major aspect of the planning process.  I hadn't heard anything for a while after offering last year to help, since it wasn't planning time for it yet, and it was nice to hear that my efforts were still wanted.  Then tonight I found out from another friend that a project I worked very hard on for my local region of APO (for those who are new to the blog, I still volunteer a lot with my service fraternity, Alpha Phi Omega) was considered good enough to be adopted on a national level with very few adaptations and is about to be published.  Working on this project had been a new and really great experience for me.  I was working outside of my comfort zone, creating something that had not existed before within APO (at least not that I could find) and doing so within an area that I did not feel like I had much experience in.  I was proud of what I created, though, especially when I had passed it on to someone who I thought would find it useful and it then got passed on to and praised by the higher-ups that didn't really know me.  For those that have read The Five Love Languages, my two primary languages are Physical Touch and Words of Affirmation.  Being a Words of Affirmation person, it's important when people I know and care about tell me I did a good job, but it's a whole different level of impact when someone who I respect but who doesn't really know me praises my work.  And now, in addition to that praise, I have the knowledge that I added something of real value to the fraternity as a whole.

As if all that wasn't enough, it snowed today!  Yes, I know it's funny to post about snow given what song I'm highlighting, but I'm a huge kid when it comes to snow, but it brings metaphorical sunshine to my life.

I don't know how long the sunshine is going to last.  But in this moment, I'm able to enjoy the sunshine and not worry about how long it will last.  I'm not sure how long that ability is going to last either, but I'm going to ride it while it does!

Fading into the Distance

The last couple of days have been...well...educational.  I ended up finding out that CareFirst, in their infinite wisdom, had denied the IVF for not trying IUI first while still approving and authorizing the PGD!!  (For those who aren't aware, it's impossible to do PGD without doing IVF.)  Between DH and a couple of friends, we've come to the conclusion that CareFirst's decision-makers are the monkeys that weren't smart enough to be locked in the Hamlet-writing room.

To make life more fun, I had a scheduled phone call with one of the genetic counselors at the PGD lab in California that my clinic wants to go with.  (Why they want to go to one in California when there's one they talk about on their website that's across the hall from the main clinic in Rockville, I don't know, but that's a question for another day.)  Apparently this clinic doesn't work with the genetic testing place that has a patent on actually looking at the gene, so they have to look at whether DH and I transferred the chromosome 5 from our moms or our dads.  To do that, they have to get genetic samples from at least one of my parents and at least one of DH's.  Then they get the same testing on those that DH and I got to see which of each of our parents is the carrier.  When they look at the embryo tissue, since they can't look at the gene itself, they have to look at, for instance, "OK, in this one Jessie's chromosome 5 came from her mom, so that one's the carrier.  DH's chromosome 5 came from his mom and she's not the carrier, so that makes that embryo a carrier but not affected."

So that adds into things time for them to send the sample kits to our parents, time for the sample kits to get back (when one parent out of four is overseas), time for those samples to be tested, and time for them to then create the primer (also with blood from me and DH).  Oh, yeah, and my insurance isn't going to cover getting those samples tested.  That's out of our pockets unless what insurance our parents have will cover it.  As is the $375 courier fee to get the eventual biopsied cells to California.  Yes, a $375 plane ticket for 20 cells or so.  Again, WHY do they not want to use the place across the hall??

At this point, it seems like all Shady Grove wants to do is make us spend more money and time.  Now there's no way we'll get in 3 cycles (if they're needed, obviously) on this round of deductible and out-of-pocket max.  DH was asking if it might be worth going with another clinic, but the closest clinics other than Shady Grove are in DC and Baltimore, and that would SUCK in terms of going there for monitoring!!  I am going to make an appointment for another consultation, though, to try and figure out why the hell the doc wants us to go with the California people.  If I get the answers I need before the appointment, I can always cancel it.  Oh, yeah, and I still haven't gotten that letter of medical necessity for the IVF appeal from him!

Judgment Day

I've been thinking a lot lately about how how judge the people around us.  Several things have been contributing to that.  Katie at From IF to When had a great post a couple of weeks ago about judgment, bouncing off of another post by Mel from Stirrup Queens.  Like I said yesterday, the Creme de la Creme list is out, and seeing my Infertility Manifesto on there reminds me of the judgments that led me to write that post.  And I had an experience recently that made me feel very judged and reminded me of the unfairly high standards that infertiles are expected to meet, as compared to people who become pregnant easily.

I highly resent being judged, particularly by a different standard than that used for other people.  Yes, I realize that by having this blog, I open myself up to be judged by more people than I otherwise would.  However, aside from a couple of specific circumstances, I haven't encountered judgmental statements from people about what I post.  People may be thinking them, but I haven't had to deal with it because they have rarely been shared with me.  Besides, I believe in the importance of shedding light on the experience of infertility even more than I hate being judged, so this is worth the price of being judged to me.

Now, I know I can be judgmental, too.  The biggest reason that I had been thinking about Katie's post is that I have been reading Inconceivable, by Julia Indichova.  I'll get more into this when I finish and review the book in another post, but the book definitely sparked judgmental feelings in me that I had to grapple with.  The author conceived on her first try at about 40 and then dealt with secondary infertility related to age and extremely high FSH.  It helped me to deal with my feelings about this that she recognized she was "going back for seconds" before so many infertiles had been served once, but I did still struggle with anger at what felt to me like naivete and selfishness/greediness on her part.  It's never likely to affect Julia, because she's never heard of me and will probably see this blog, but it still struck me that I was being judgmental of her and that it wasn't fair of me.

Back to a couple of days ago, DH and I were essentially told that we really shouldn't be parents because at this point, while we don't have kids, we engage in activities that involve travel and being away on weekends, and we haven't committed to giving every bit of that up before even conceiving.  Who said this is immaterial here, it's the point itself that really had my blood boiling.  It is nobody's right except mine and my husband's to determine how is right for us to live our lives.  Unless there is a reason to suspect abuse or neglect, it is nobody's right except mine and my husband's to determine how to raise our future children. Unless there is a reason to suspect abuse or neglect, it is nobody's right except mine and my husband's to determine whether we "should" be parents to a hypothetical child that may never even exist.

DH and I both know that if we are able to have children one way or another, our lives will change drastically.  We know that what we are able to do, the amount of traveling we will be able to do, and the breadth and depth of our activities will change drastically.  Doing all of the things that we do to the extent that we do them will be impossible for a time.  Whether that time is two years or twenty, we have no idea and will not be able to know until we get there.  Doing absolutely nothing except work and parenting would be impossible for us as well, though.  I have seen that kind of parenting in action, and it's not what I want for my child, let alone for myself. 

All that said, though, I don't owe you or anyone else that explanation, and neither does DH.  It's none of your business what discussions we have had between us about how to schedule things and how much we will continue to do unless we choose to share information with you about it.  It's not even any of your business whether we're even had those discussions unless we choose to share that information. 

You wouldn't tell a woman who is already pregnant that maybe she shouldn't be a parent.  Don't say it to me.

Music Monday #1 - Mission: Impossible

One thing that is done every year in the ALI (Adoption, Loss, Infertility) blogging community is Creme de la Creme, a list of personal best posts of each year.  As I was reading through the list for 2011, which was just posted, I came across Tanya's idea of Music Mondays.  Because imitation is the sincerest form of flattery (and because I found this on the first Monday of the new year, which makes it even more fun), I'm snagging her idea.

So far all this IVF thing feels like is Mission: Impossible.  After getting the answer about the out of pocket max last Monday, I haven't been able to make any real progress since thanks to the damned holidays.  So far 2012 has been nothing but more obstacles, except for getting some stuff done at work today.  It's mostly been little things, but it just adds insult to injury, which I really don't need right now!  So far there sure hasn't been anything to give me any reason to believe that 2012 will be any better than 2011 or 2010 or 2009.  So that's my song for today, damnit.  Maybe later I'll have a song that's sunshine and rainbows and unicorns, but that day is not today.

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!!

Do You Have Any News?

I got asked that today by my great-aunt, the first time I've ever been asked that blatantly.  I don't see or talk to that side of the family that often, since they live out in Ohio...the last time I saw my great-aunt was the month before DH and I started TTC.  Apparently right about that same time, two of my cousins conceived with their new wives.  The one that is just a couple of months younger than me is expecting his second baby in a few months, too, so that's someone else who has lapped me.  I did everything sooner than Jared.  I was born 3 months sooner.  I graduated high school and college a year earlier, since his birthday was enough later to put him in a different school year.  I got married sooner.  But not only did he have a kid before me, he had kidS before me.  Before I could even get within sniffing distance of having one kid, he has two.  And I get asked if I have any news in the same breath that I get told about how wonderfully fertile the rest of my family is.

Thanksgiving

Thanksgiving has always been one of my very favorite holidays.  I have so many memories of cooking with my mom, and I'm really glad to have her here for my birthday and Thanksgiving.  One thought I had tonight, though, as I'm still up doing prep work, is that I may not be a mom, but I sure as heck act like one when it comes to cooking holidays!

The Big Day

Well, I'm 30 now.  As I was on my way to bed last night (ok, early this morning), I was thinking that it felt weird in its very lack of weirdness.  I know I'm not any different than I was yesterday, and I didn't feel any different than I did before midnight, but it felt like maybe something should feel different.  Which is completely silly, I know, but anyone I know IRL can tell you how silly I am!!

I did get about the best birthday present possible from my friend K last night.  After she had shared her wonderful news, we were talking about what would come next for us, and I told her that we were hoping the finances would work for a cycle early next year.  K and I were talking about flex spending accounts, though, and she reminded me that if we use DH's FSA, the money is available as soon as the year starts.  I had completely forgotten that about FSAs because neither DH nor I has had one available to us for about the past 3 years.  Even better, K and I had this conversation during DH's open enrollment time, so we didn't have it too late for him to enroll, nor did we have it (this time, since we have talked about it before) so early that DH and I would forget by enrollment time.

Also, since I'm flying somewhere in January and was hoping to get by with just a carry on, K let me know that I can take the needles on the plane if I'm that far into the process, as long as I have the medical necessity paperwork with me!

So I'm going to see (just not today) about making an appointment to discuss timeframe.

ICLW #3

Welcome fellow bloggers and commenters!  I'm Jessie and this is my own special place to acknowledge the fun kind of hell that is infertility.  Can you tell I like sarcasm?

I'm actually a little more upbeat and sunshiney than usual lately because my 30th birthday is on Wednesday.  Maybe it's because I've gotten to watch all my friends turn 30 already (ah, the joy of having a late birthday), or maybe it's because it would be really hard for 30 to be worse than 28 and 29 were, but I'm actually really looking forward to 30.  We'll see how long that lasts, but for now I'm going to enjoy it!

In terms of our IF journey, DH and I started trying in August of 2009.  We had some basic testing in the summer of 2010 and then found out after $1400 in bills that our insurance didn't cover testing.  I got insurance that did cover it this summer, and we got a diagnosis of unexplained infertility and were preparing for IVF #1 when we found out that I'm a carrier for spinal muscular atrophy.  After several more insurance issues, we've finally been able to do the test to see if DH is also a carrier, and we've got 2-3 weeks now to wait for the results.  We're hoping to get the coinsurance together to be able to try again on IVF #1 early in the new year.  Until then, the waiting game continues.

We Plan and God Rolls Over Laughing

I've been thinking over the past couple of days about things that I'd like to be able to do within APO.  And when I think about it, I get frustrated about how the infertility screws that up.  I hate not being able to think about things more than 9-12 months in advance.  The only reason I can even think 12 months in advance right now is because I know we can't afford to try IVF until the spring.  Still, depending on what happens when in the spring, I don't know if I'll even be able to fly to get to the convention at the end of 2012 in Anaheim. 

Ever since I stopped having the year-long elected position I used to have, I've been working on one project and then another.  I've been trying to put things together to keep me busy and give me chances to both develop my skills and see my friends.  The one advantage that I have right now is that anything new I start doing at this point would end before we could have a baby or right when it would happen since things reset at every convention.  Still, when I think about things I might like to do after a year from now, I don't know whether to think of them as possibilities or as something to think about doing someday, and that's frustrating.

Wishin' and Hopin'

So, people were making a big deal about making a wish at 11:11:11 on 11/11/11.  So I made a wish.  Three guesses what I wished for.  What the hell, it can't hurt, right?  Sure, there's no reason why it would help, but it's free and it won't hurt.

LOTS of blog posts about rising betas lately.  Put in the order for DH's genetic test last night.

Musings

I saw on Facebook today about the Duggars conceiving #20, and DH's first comment was that he expected the servers for STFU Ferts to go down.  My main thought about it is that I'm starting to think DH and I (along with a few other infertile couples) need to go visit out there for a while to see if the baby dust will rub off! 

Earlier I saw a friend that posts the milestones for his daughter had commented that she's 23 months today and that in another month she'll be a big girl and he'll have to start giving her age in years instead of months.  Yes, the kids that were born around the time DH and I started TTC are getting too old to be referred to in months.  That really drives home how long it's been.

I was able to appreciate my cousin's baby today, and I got a call back from Shady Grove with a code for DH's genetic testing.

Inching Closer to Progress

DH has his new insurance now and tried to sign up for the genetic test, but the code from our doctor's office wouldn't work.  So I'll call Monday morning to get a new code for him to use, and then we can get the test kit sent to us.

A Little Relief

I was going to write a post about how damned emotionally tired I am.  Then my friend asked if I wanted him to change the subject, and when I said yes he asked me what my favorite recipe is.  I rattled off a bunch of things and then told him it was opening a can of worms to ask a cook what her favorite recipe was (although none of my favorite recipes involve a can of worms!).  So now I'm distracted and not quite as down, which is nice.

Halloween

Yesterday, RESOLVE's Facebook feed was asking people how they were handling the holiday.  Halloween's actually not a holiday that I have any problems with.  I think the reason for that is that, at least in my neighborhood, I only get a couple of babies at the door; it's mostly older kids.  Older kids don't bother me the way babies do.  Yeah, everyone's posting pictures of their babies in their cute little Halloween costumes on Facebook, but a lot of my friends are posting pictures of their babies all the time, so Halloween ends up being nothing different.

Obviously I don't like that this holiday is distinguished for me by being less hard than it is for many infertiles, but I'll take what I can get.

Trying to Move On as a Family

So far, Summer seems to be her usual playful self, but DH noticed tonight that Pumpkin seems to be withdrawing some.  DH spent some time petting her and telling her that we love her and that we love her brother too.  We're going to make sure to give her some extra attention over the next few days.

I'm really glad we got Summer from my mom and grandmother back in April when we did.  Pumpkin's generally quiet enough that the house would have seemed way too quiet if we were just left with her.  But because Summer was already part of the family before we lost Kechara, she doesn't feel like an attempt to replace him.  Sometimes I'm ok, and sometimes I just want to cry.  Anytime I let myself really stop and think about him, I cry.  I'm able to think about the good times with him, but they still make me cry at this point.  I know it will get better, but I'm not there yet.

On a happier note, I'm thrilled for K and her rising beta!!

The End of an Era

Kechara

5/24/99 - 6/28/11

Kechara was my baby from the day he was 6 weeks old, when he came back from Ohio with us, falling asleep in the tiny loaf pan of litter we had placed in the carrier in order to introduce him and his sisters to the concept of litter (they had been barn cats).  He was my cuddle boy up through this afternoon, when I held him (and DH held both of us) as he died.  After the seizure he had this morning, it was the right thing to do, but oh, it hurt.  I'll say more later.

Creme de la Creme Decision

I'm trying to decide which post to submit for the Creme de la Creme list.  For those who aren't aware, it's a place for people to choose their best post of the year to submit.  I've narrowed it down to 2, my return to writing poetry, and my infertility manifesto.  What do y'all think?  So far, I have one vote for the manifesto.

ICLW #2

As we get into my second International Comment Leaving Week, it's been an eventful week over in this part of IF-land, rife with hard financial decisions.

For those new to the story, DH and I are currently stalled out waiting to find out whether he is a carrier for spinal muscular atrophy, like I am.  Finding out that I'm a carrier killed our cycle from last month before it started and pushed us into a new insurance year and new insurance plan, taking us from no coinsurance for IVF to $1500 coinsurance.  We've been waiting for insurance coverage for DH in order to get the testing done.  He could have gotten it done while he was on my insurance this month, but it's taken two weeks so far to find out what effect that would have on the HSA that covers my deductible.  His new insurance will take effect this weekend, and once we know his insurance numbers, we can order the test for him.  We can't really afford to do the test at this point, since it would fall under the deductible and thus come out of our pockets.  At the same time, the emotional cost of being stalled out is high enough that DH said tonight that we can't really afford not to do it now either.

Speaking of costs we can't afford, my oldest cat, Kechara, was sick again over the last couple of weeks.  Through it, we found out that even when he was healthy, he was losing weight.  He's lost 5 pounds over the last year or so.  The vet said last night that if his labwork came back normal, which it basically did, that we'd be most likely looking at cancer.  However, there's no way to tell unless we do an x-ray ($150) and possibly an ultrasound (a couple hundred dollars).  And if we find out that he does have cancer, we'd have the question of whether surgery would be helpful or harmful and, if it would be helpful, whether we could afford it.  There would be no way to afford it without putting our dreams of IVF on hold for a while longer. 

So I'm feeling caught between whether to possibly save the life of the furry child I have now or whether to create my possible human child.  Either way we're looking at uncertainties and possibilities.  I don't know if Kechara has cancer.  I don't know if we would be able to conceive on the first try with IVF.  I don't know if he does have cancer, if it would be operable (without hurting him more than it helps).  I don't know if we could become pregnant through IUI instead of IVF.  I don't know how long Kechara would live if cancer was able to be surgically removed...he's 12 years old, but before last year he was perfectly healthy despite being overweight.  I don't know anything except that it will break my heart whenever I do lose Kechara and that it's breaking my heart not being a parent to a human child. 

Touching

As I was working last night on my workshop for this weekend's APO conference and telling a non-APO online friend about it, that friend said, "You do have a servant's heart, don't you?" I was really touched by that, even though all I do is live the way God made me.

Giuliana Has Cancer

Giuliana Rancic just announced on Today that during the process of her third IVF, they found out that she has early stage breast cancer.  She's having surgery later this week and will try again for IVF #3 after the surgery. 

She had an interesting quote about the situation: "I still want this baby...because this baby has saved my life."  I would be interested to see what was in the ellipsis, but HuffPost didn't put that in the article.  For many of us, it's easy to feel like having a baby would save our lives figuratively, but most of us don't have the process save our lives literally like her.  Good luck, Giuliana!!

The Nature of Blogging

It's interesting watching Julie and Julia and thinking of getting blogs started.  It was about a month after I saw the movie that I started this blog, although I had been thinking about the possibility of a blog for 2 months by then.  Over the past year, I've seen the number of people reading this increase little by little, and I identify with the feelings Julie had about wondering whether people actually read/care about what I'm writing.  My mom is more supportive of what I'm writing than Julie's mom was in the book/movie, but then again, I'm not doing anything crazy, just trying to have a baby.

On a side note, the movie does a good job of touching on Julia and Paul's infertility without dwelling on it.

It's especially interesting watching the movie right now while reading the book Julie wrote after this, called Cleaving, about the affair she had after the book came out and learning to butcher after the affair ended.

I'm getting fun ideas for things I want to make as DH and I chat with my father-in-law about food and cooking techniques.

Because I Needed Life to Suck More

So then I get home for a bit and get the mail, and I find out that my doctor doesn't take my new fucksurance plan.  And as I go to the computer to verify this, my watch breaks.  I start crying and my nose starts bleeding. (I get nosebleeds when the weather changes, but this fall I had avoided them so far despite spending the past week croaking and unable to breathe).

Ah, Irony

It felt weird enough to be infertile and taking BCPs in preparation for the IVF-that-wasn't.  I have to say, though, it feels even weirder to be checking the nightstand to see if there are any non-expired condoms left in there.  At the same time, I'm too scared to risk conceiving before we know whether DH is a carrier for spinal muscular atrophy. 

We can't get him tested until he starts his insurance, which will now be 2 weeks later than we thought because of security and stupidity, which are sometimes synonymous.  Good thing we were able to get him onto my insurance for a month to fill the gap between when it ran out from his old job and when he starts the new insurance...MUCH less expensive than COBRA!!  Still, I bet we won't be able to get him tested right away even when he is on his insurance because it'll fall under the deductible, which will mean we still can't afford it.

Just, Wow

Even the damned spayed cat thinks she'll get IVF before I do!!  Unfortunately, I didn't get a picture of Summer sticking her paw through the flaps of the box of meds.

Hunkering Down

I last used those words during the hurricane we had at the end of August, but they feel appropriate now.  Or at least they sound better than "running and hiding" and make me feel like less of a pathetic wuss.  I'm about to go out for lunch, even though I brought stuff to make my own, because I've just gotta get out of here.  They're about to have the shower for my coworker's oops baby.  This is the coworker that had the baby a month early after a ruptured placenta, and I'm REALLY glad that she's ok and the baby's ok, but she's brining the baby, and I wasn't sure if I was going to be able to handle the shower even before she had the baby early.  I had tears in my eyes signing the card earlier today, and that was my signal that I just couldn't do it this time.  So I'm trying to hunker down and make a tiny little secure cave to hide in, just big enough for the turtle shell I'm trying to withdraw into so I can survive.

Curses, Foiled Again

DH has about 10 choices for insurance.  None of them are any better 50-50 on infertility coverage.  There is still one possibility for us to be able to have a cycle before spring: DH doesn't count the third paycheck of a month into our budget for the 2 months per year it happens that way.  Next one of those will be December, it looks like.  I've got a call in to the genetic testing people to see if any of the plans cover DH's testing, and hopefully they'll call me back tomorrow.  The other thing we'll need to budget for that I hadn't been thinking of is PGD, if DH also is a carrier for spinal muscular atrophy.  The plan that finishes this week for me did not cover it, and I need to check if my new plan will cover it...none of the options for DH do.  Anyone have any idea how much PGD runs? 

In other news, I was fiddling with my Facebook list again tonight because I had added some new friends.  So I looked to count the friends within 5 years of my age who are married and compared that to the number of people who are within 5 years, married, and parents.  Among my married friends within 5 years of age, 62% are parents.  That doesn't really surprise me either...after all, about 1 in 8 are infertile, and there are some that aren't ready to start a family yet.

Happiness and Jittery Afraid-to-be-Excited Nervousness

So, at the end of July 2010, I fell on a set of steps at a subway station and my assembled clarinet (Buffet E-11, for those who know) fell over the railing and down to the platform.  I thought it was toast.  This clarinet was the first non-student-model instrument I had owned.  I had bought it myself when I was in college, the first time I had decided that I was enough of a musician to deserve a real instrument.  So yeah, I had enough emotion invested in my clarinet that when it broke, I was a sobbing mess.  I replaced it with an instrument of similar quality that I bought off fo CraigsList, a Selmer, but I was never really happy with it.  It just didn't play like my Buffet.  It wasn't worse, per se, but it was different enough that I wanted my Buffet.  I was finally able to make contact with a woodwind repair man that my mom used to apprentice with, and I took my Buffet in today to see if it was salvageable.  And it is!!!  It's going to cost about $350 plus whatever we can get a bell for (the bell was completely shattered) and it's going to take him a while to fix, but so much the better because that gives me time to save the money up.  I had tears in my eyes, I was so happy!!

The jittery nervousness comes in because when I go home, I'll get to see what DH's insurance options are.  My first inclination is to be excited because this is the government and the government has good insurance, but I'm scared to be excited because that has never ended well in this IF journey.  If the options aren't any better than what I have now, the prenatal vitamins are going back in the medicine bin in the closet.  No need to waste them by taking them when I can instead save them for next year when they have a chance of being useful.

Cheering Myself Up

For one thing, I do need to give DH a lot of credit.  He's been really great lately, sensitive to my needs and supportive.  He's still letting me know how he feels, so he's not "taking care of me" by hiding how he feels.  But he's caring for me without resenting or being annoyed by me needing care.

I noticed on Wednesday night that the Princess Diaries was on.  I watched that and the second movie when it came on right after.  I then watched the end of My Sister's Keeper and then all of A Cinderella Story before going to bed.  I noticed that watching silly chick flicks made me happy.  I decided to run with that today, watching one chick flick after another all afternoon and evening.  I also made a tiered cake for the first time and experimented with a couple of other techniques on DH's birthday cake.  I've got a LOT to learn and improve on with cake decorating, but considering I'm entirely untrained and have learned what I have from books and LiveJournal, I'm pretty happy with it.

Whirlwinds

That's what this past week has felt like.  Today should have been my transfer if we ended up with a three-day.  We should have been getting a possible baby for our five-year anniversary and DH's birthday.  Instead, I get more births and baby announcements and sonogram profile pics. 

I took a survey for a study at Drexel University about online support and IF forums.  Part of what the survey covered was symptoms of depression, and it really struck me to see just how depressed I've been over the past two weeks.  I know I've been depressed, and I've taken my Zoloft up to 150 mg in response, but it still struck me how depressed I've been.  I can catch the nuances in others, but not as easily in myself as long as I'm staying away from the major red flags. 

I did end up counting the people within 5 years of my age (excluding the gay ones but including the unmarried ones) and the ones pregnant or with kids.  I wasn't going to, but when I ended up clicking on every person to put them into a list so that I could make Facebook look normal again, that was too much temptation to resist.  So, out of the 507 straight friends I have within 5 years of me, 188 have kids or a pregnancy, or about 37%.  So, my perception was right about correct.  I could see what the percentage of married/committed ones with kids or a pregnancy is, but since several of my friends are single parents, I'm not sure what that would change.  I still might do it, we'll see.  End result, though, is that it didn't change anything, all it did was confirm what I already believed, and I'm not having the stress of thinking I shouldn't do it because it's batshit crazy.

Less crying in the last day or so.  Last night, I ended up watching chick flicks for most of the evening, and that made me happy.  Trying to find those little things that do help and cobble them together into...something.

Welcomish

Welcome to anyone coming for ICLW.  For my regular readers, this stands for International Comment Leaving Week, an initiative to get people reading and commenting on each others' blogs and feeling cared about.  I've seen it for at least half a year now, but this is the first time I've tried to participate.  Hopefully I'll be able to do as much as is requested (6 comments a day on participating blogs).  Now you can ignore me for the last paragraph as I catch up people who haven't been with me through the last year or two.

For people who are new, here's the recap in a nutshell: Started TTC in August 2009 with charting and OPKs, started getting frustrated in spring 2010 but didn't get really frustrated until we were getting up on a year.  Got DH seen in summer 2010 and me in August 2010, was told that two things for him and one thing for me "should not be a problem," found one major problem in learning that insurance had covered none of that.  Finished paying off $1400 in medical bills in March 2011, managed to change insurance plans in June, saw RE in July, scheduled to have first IVF in September.  A week later the shit hit the fan: flipped my car (yes, I'm ok), found out my father-in-law may be dying, spent over $2000 keeping my cat alive, found out I'm a carrier for spinal muscular atrophy and IVF had to be put off, found out that insurance is changing on October 1 to a plan with coinsurance for IVF that we can't afford until next summer, found out that grandmother is in the hospital and may be dying.  OK, so it's a big nutshell, maybe a coconut shell.

We now return you to the regularly-scheduled bitching.

Stopping Myself

I'm not going to look through my 1086 Facebook contacts to look at how many of them are within 5 years of my age and then figure out what percentage of those have kids or are pregnant.  I'm not.  I know it would just make me feel even more like shit, so I'm not.  But I can't lie, it seriously crossed my mind.  Not actually as an act of self-flagellation, but to find out how much my perception coincides with reality.

Punctures and Punctuation

Tonight I was supposed to have my trigger shot for my egg retrieval.  This month feels like nothing but should-have-beens and no-time-soons.  This feeling was, as DH put it, punctuated tonight by going to an event at the curling club and (in addition to seeing a pregnant woman I didn't know) finding out that one friend and one acquaintance are pregnant.  I'm glad for my friend, but at the same time, each one is another puncture wound in my heart.

I think I'll be dealing with things a bit better once September and maybe the first part of October are over, once we're past all of the days that were written down on my schedule of events.  I sure as hell hope so, at least.  I can't take it if it doesn't get better.

DH was suggesting that I try to do more things with people who aren't parents.  I went out with the UM clarinets for tapas last night and had a lot of fun.  It felt good and was what I needed, a chance to not deal with it all for a night.  DH has (half-jokingly, half-seriously) batted around the possibility of banning me from Facebook when there is one pregnancy announcement after another upsetting me.  The problem is, Facebook is no worse than my real life when it comes to that.

Today is one of those days when I hate people.  That is all.

Held Back Again

I feel like I'm one of the kids I knew who was held back in Kindergarten, unable to get past what should be the easiest part. 

I got the call back from the genetic testing people this morning.  The test is $500 if they run it through insurance, and he has a $500 deductible which of course he hasn't met yet because he's DH and he never gets sicker than a cold. It would be only $350-400 if it was just paid by cash, but we don't have that kind of money either. 

So, we wait to see what his new insurance covers.  Fortunately, his insurance will kick in as of the first day of the new job, with no 30 or 60 or 90-day probationary/waiting period.  Unfortunately, he won't find out anything about the 4 plan options until that first day, so his insurance will backdate to the first day but we will still have to wait while we make a decision and the paperwork goes through.

It's hard for me to even write this, but I called my nurse a few minutes ago to say we had to put everything on hold for however long.  A couple of my coworkers told me to ask if they do payment plans for the patient part of things so we could do something sooner than the middle of next year, and I didn't think they did but I checked anyway...I was right.

So now we wait. Again.  Our nurse at work had her baby a month early (prayers are needed for them both...she had a ruptured placenta, and the baby is in the NICU at Children's), and now I'm wondering every day as I go in who's going to be the next one to announce.  After all, it doesn't seem possible at this place to NOT have someone pregnant, and it's sure as hell not going to be me, so someone's got to fill that gap.

Pitfalls and Tripwires

That title was a chapter title in one of the Wheel of Time books I've been listening to lately, and it seemed to fit, since everything we encounter seems to push back our dream of a family farther and farther. 

My insurance is changing again.  I'm going from no coinsurance to 50% coinsurance.  That's only up to an out of pocket max of $1500, but there's no way we can pay $1500 for close to another year (at which point the insurance will probably change again).  So the box of medications gets to sit there in the dining room, as lonely and forlorn as I feel.  I don't even know if we'll be able to use it when we can get money together, or if I have to try IUI first.  After all, my RE was surprised that it wasn't a requirement on my last insurance.  I just sent an email to our representative at the new insurance to ask her.

Ended up losing my cool and crying like an idiot in front of our HR person, our financial manager (who almost everyone is intimidated by), the insurance rep and the insurance broker yesterday.  I still don't get how it's impossible for them to get shit together to give us longer than a 4-day open enrollment period.  Every company I've worked at before has given a month, and every company DH has worked for has given either 2 weeks or a month.  I was at least able to find out that if I go with our insurance, I can cancel that through 10/31 if it turns out that the insurance is better at DH's new job.  We have friends that work there, but it's hard to get what we need in terms of answers about coverage at this point because there's 4 different plans DH can choose from, and our friends don't know details about all 4.  Still, being able to make that change helps avoid the short open enrollment period screwing us over like it did last year.  It makes me so mad to think about the fact that we could have had a couple of cycles under our belt, maybe even one that worked, if the open enrollment period last year had been even 2 weeks, long enough for me to get answers from them about what was covered! 

Since I've been having such a hard time with all this lately, I'm going up to 150 on the Zoloft, at least for a little while.  Still need to talk to the nurse at work about the real safety of Zoloft, with those commercials making DH twitchy.

Still haven't heard back from the genetic testing people on whether DH is currently covered for the test.  If I hadn't been a stupid SMA carrier, we could have actually had this cycle before the insurance changed!  September 8 was the one-year anniversary of this blog and was also supposed to be the day I would start my shots.  Instead I felt like crap and went home early and took Tylenol and lay down.

At least miracles do happen to other people

My status update last night was that miracles only happen to other people.  Today I found out that a miracle did happen for a couple that DH and I are close with that have been TTC as long as we have.  Out of the 4 real-life friends that I've been traveling this journey with, one had her baby over the summer, one is at 10 weeks, and one has an IVF cycle next month (the other just got her BFN from her latest IVF cycle).  I appreciate the online ALI (adoption, loss, and infertility) community, but knowing people in real life who are dealing with it, people who aren't friends because of infertility, helps too.  So at the same time that I'm glad when my friends are able to escape this hell (for the most part, since one an infertile, always an infertile), it leaves me lonelier and more alone.

At least some people do get their miracles, though.  I still don't think, can't think that it's going to happen for me.  But even when it's hard to hear about other people and know that my miracle has a good chance of never coming, I'm glad that miracles do happen for other people.  It sure as hell beats no one getting a miracle.

A Prayer for Today

Lord, please grant me strength.  I'm out of what You gave me before.

It's Setting In

So I mentioned before that I wasn't sure how I was going to react when the delay in the IVF cycle set in.  Well, now I know.  I'm reacting like crap. 

It hurts more to be around babies right now.  It hurts more to be around pregnant women right now.  It definitely hurt when people were doing that stupid pregnancy/"breast cancer awareness" meme. I'm dealing with it.  I don't really have a choice about dealing with it, with two close friends and a number of other friends due soon and two showers coming up in the next 2 months.  Besides, I keep going.  I manage.  It's what I do.  Somehow.

Me, DH, and Irene (Plus 3 cats)

So far, we've only had one hurricane-related casualty: not long after we filled the bathtub, we heard a splash and paws running under the guest bed.  The almost-kitten (over a year old but still acts like a kitten) was at it again.  And yet after DH got her out and was drying her off with a towel, she was purring up a storm.  Silly girl.  :-)

Spent the day mostly doing preparation we didn't get done last night...a few last minute loads of laundry, a few more things to gather for our evacuation kit and my deployment kit.  We definitely do not expect to evacuate, because we're unlikely to get flooded (didn't get flooded during Isabel, which was worse), we're prepared for a power outage, and the one road off the peninsula I live on is probably already flooded anyway.  Not sure if I'm going to get deployed with the MD Defense Force...since I'm on the mental health team, it probably depends on how crowded and thus crazy the shelters get.  Some of our engineering unit is deployed on the Eastern Shore, but no one else can get there except by going the LOOONG way around because the Bay Bridge is closed now.

Tomorrow I'll probably get around to random things.  We did a little bit of random stuff today, like putting together and hanging part of the World's Largest Crossword Puzzle that DH got me a couple of years ago, and he did random organization in the office.  I folded all the clothes that had been scattered across the guest bed, so I feel somewhat accomplished.  The big thing I want to do tomorrow is shelve all the books I got at Borders last weekend.  I know I sound like I work in a library, but I have enough books to seem like one.  I had told DH in January that we needed a new 6 foot bookcase because I had too many stacked in random parts of the dining room.  I think I can keep from overflowing this one with what I have now...

As I looked at my meds to pack them for if I go anywhere, it struck me how weird it is to be taking Pills and prenatal vitamins at the same time.  :-p

Slamming on the Brakes

From cruising down the highway feeling the wind of my passing to...SCREECHHH!!! 

I got a call this morning from the doctor.  Not the nurse. The doctor.  My genetic testing had come back.  I figured I wouldn't be a carrier for any genetic diseases since there was no family history and I wasn't a part of any at-risk group.  So much for that.  Apparently I'm part of the 1 in 50 that is a carrier for spinal muscular atrophy.  So now we have to get DH tested before we can proceed with IVF. 

Under ordinary circumstances, this would take 3-4 weeks: time to order the test, get the kit sent to us, mail back a sample, and about 2 weeks for processing.  However, we aren't sure if DH's insurance covers it.  Which is better than being sure it doesn't...we have a chance because the test isn't necessarily for infertility.  If it's not covered, we'll wait a little longer to see if DH's new insurance covers it.  Yes, new insurance.  He starts a new job on 9/26.  For those that know us in person, you'll have to ask him about it.

I asked one of the nurses whether I should continue taking my Pills until we are able to start the cycle or if I should stop them instead.  She told me that I could do either one and that some people prefer to get off of them as soon as they can because of side effects.  Um, no, I'll keep taking them, thanks.  The worst part of TTC (until it reached the point of IF) was not having the Pill helping to keep me out of pain.  Besides, the nurse mentioned that if I kept on them, we could start the cycle whenever we had the test results since we wouldn't have to wait for me to take the Pills for 2-3 weeks.  Because of that, I don't have to start the cycle at any specific time of the month, which makes it easier to control (in a broad sense) when all the appointments end up falling. 

From what I've been told, it's not that big a deal even if DH shows up as a carrier for the same thing as me.  We would need to use PGD to make sure that no embryos with the wrong genes are transferred.  I shouldn't have any problem having enough embryos to still transfer, given the number of antral follicles I had.

At this point, the main thing I feel is stunned and jarred, as if I really had slammed on the breaks when driving on the highway.  I had a few tears come to my eyes as it hit me that we had to put this off, but I haven't broken down crying or anything.  I don't know if, as it sets in, I'll be sad or angry or what.  What does bother me is that putting off the cycle decreases the chance (already small) of DH's dad getting to meet a grandchild.  He's got a year at most left unless a miracle happens, and a year is with chemo that would be utter hell to go through.

As we were watching hurricane coverage tonight, DH noticed again an ambulance-chasing commercial for people who had given birth to babies with defects after taking antidepressants during pregnancy.  One of the antidepressants mentioned was Zoloft, which I've been told by multiple people (including my psychiatrist) is safe to take during pregnancy.  DH raised the question of whether taking medications at all during pregnancy is a good idea.  Like I told him, it's a very small percentage of people that have problems, but then again, it's a very small percentage of people who are carriers for SMA, too, which makes me less confident about trusting to chance even when the odds are that stacked.  If I was to do it without meds, I could.  I made it through worse than those hormones without meds.  The biggest issue would be DH's reaction to me, though.  He already worries enough about what pregnancy hormones would do to my depression, since a bipolar friend had to be off work for about 9 months after giving birth to get her meds straightened out.  I told him I'd ask one of the prescribers at work what she thought, and we would make a decision over time based on that.  I'm fine with the idea of being off meds...my original plan was to try to do it med-free.  I only went on the Zoloft when I felt myself dipping into an episode after losing a friend to cancer.  So, we'll see.

On Pins and Needles...

...when I think about needles going into me.  We had the mock embryo transfer and the injection class today.  The mock transfer actually hurt more than the HSG had, much to the pain of DH's hand.  The doctor said everything was basically normal (there was a blood clot in there, but he said that's normal while taking the Pills). 

After that, we had the injection class.  DH was the only husband there, which he and I both thought was interesting.  Then again, I was the only one there who knew she was way too scared to be able to do the injections herself.  I must say, I was shaking looking at the needles, but we both learned.

When I got to work, the receptionist told me that my box had come.  I was confused at first because the pharmacy had told me there would be some in the box that were in foil bags and needed refrigeration, but there were no foil bags in the box.  I called the pharmacy and found out that one type of one medication needed to be refrigerated, but I had been given the kind that did not need to be kept cold.  My Gonal F will need to be refrigerated once it is reconstituted, but not before.

Two weeks before the shots start...

Warp Zone

All of a sudden everything for this cycle feels like it's going at warp speed.  Like I think I had mentioned, we're doing two weeks of Pills at the start of this cycle instead of three to make the timing work out better.  So on Tuesday, I went in for my day 3 bloodwork (just an LH check).  At the same time, I got my updated schedule, my nurse said she was putting in the orders for the meds, and I scheduled my mock embryo transfer and our injection class.  The injection classes are only done at the Annapolis office on Tuesdays and Thursdays, and I don't have much time before we're doing the injections, so the mock transfer and class were scheduled for only two days out, tomorrow morning.  Tuesday evening I got a call from the pharmacy checking the numbers of meds and supplies (as if I had any idea what the correct things were!) and telling me I had to have someone to sign for them.  I asked for them to be delivered to my work so the receptionist there could sign for them, and the woman told me that they would be delivered this Thursday.  I had no idea they would arrive that fast!!  So I had my bloodwork and scheduled everything on Tuesday, and now on Thursday I'm having the mock transfer, the class, and the med delivery.  It makes sense to get these steps over with now, but I guess I thought more of them would be next week, closer to when the rest would be starting to happen.  Heck, next week I won't end up doing anything except taking my Pills and worrying about how bad the needles will be!  I know what you said, Katie Z, but I'm not going to be able to believe it until I feel it for myself.  God, I can have faith in...needles not being too bad, I can't.

525,600 Times 2

I was thinking this morning about how the passage of time has been marked during the past two years.  It feels like it was just a couple of weeks ago that I was hearing about a spate of pregnancies among family and friends, and now the August ones have come and the September ones are about to arrive.  As I was driving the rental car today (since I still haven't had any chance to get a car for myself), "Seasons of Love" came on the Broadway channel on Sirius, and we had a post title. 

Although I don't usually consciously think about it, babies develop and change so fast that it's like I can see the impact of time passing (as it feels fast and as it feels slow) in their development.  We first tried to have a baby almost exactly 2 years ago.  The babies of friends that were born in the first few months of TTC are full-fledged toddlers running around.  A year ago was when we were getting the tests that didn't end up being paid for and around when a baby would have been born if we had been like most couples and conceived in the first few months.  The babies of friends that were born then are walking and talking now.  I don't get into thinking, "If we'd had a baby in X month, it would be this old now," but the ages of my friends' babies still make an impact on me without directly triggering that thought process.

On another note, I'm wishing good luck and baby dust to my friend A as she has retrieval in the morning!!

Beginnings?

A friend asked me tonight how I feel with it being day 1 of my IVF cycle.  I told her I wasn't sure, beyond "weird."  It seems like it is the beginning of me and IVF...but not at the same time.  All I did today was take my first Pill (and forget to call my nurse to schedule my mock embryo transfer and injection class; I'll have to do that tomorrow morning).  It's not like I started the hormone shots today.  On the other hand, with the mock embryo transfer and the injection class I will end up doing, I will have things that will make it feel more real before I do start the shots.