One woman doing her part to break the silence that surrounds infertility.
Wednesday, January 25, 2012
Book Review - What He Can Expect When She's Not Expecting
I decided to pick the book up again after I came home worrying that I was so far up in the crazy tree that I could see for miles. DH told me that as long as I wasn't considering kidnapping, I wasn't topping out the "Wife Psycho Level" scale and pulled out the book to show me what he meant. Now, I can see some people getting offended at the idea of there being such a scale in there. Not me. As a therapist, if you get offended by stuff like that, or are even just not able to laugh at it, you won't last long in the field without getting really burnt out.
The book is very clearly written for guys. It uses a lot of sports comparisons (which was fine with me!), and does a lot of boiling things down into what the guy needs to know, what the guy needs to do at a minimum, and what the guy can do to earn extra brownie points. Dr. Rosen interjects into what Sedaka is saying to add in the medical details and to tell Sedaka when he is dumbing it down too much. Throughout the book, Sedaka does an effective job of weaving his story in with the knowledge that he wants to convey while making sure the book still flows well. I definitely recommend it for couples, especially couples where the husband is not one to assume the worst scenario presented will be the definite outcome.
Tuesday, January 24, 2012
Music Monday #4 - Shades of Gray
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.
Monday, January 23, 2012
Let the Countdown Begin
In other "about damned time" news, our Christmas tree came down tonight thanks to DH. And the two younger cats are in mourning.
Sunday, January 22, 2012
ICLW #5
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.
Friday, January 20, 2012
Sent
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!!!
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.
Wednesday, January 18, 2012
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.
Tuesday, January 17, 2012
Music (Tuesday) #3 - Our God (Is Greater)
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.
Tuesday, January 10, 2012
Music Monday #2 - Here Comes the Sun
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!
Friday, January 06, 2012
Fading into the Distance
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!
Wednesday, January 04, 2012
Judgment Day
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.
Tuesday, January 03, 2012
Music Monday #1 - Mission: Impossible
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.
Friday, December 30, 2011
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).
Thursday, December 29, 2011
I Don't Even Know Anymore Who I'm Supposed to Be Mad At
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.
Tuesday, December 27, 2011
One Major Answer Acquired!
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.
Sunday, December 25, 2011
Wow, That Came Out of Nowhere
Thursday, December 22, 2011
The Nightmare Continues
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.
Tuesday, December 20, 2011
Oh, You Have GOT to be Kidding Me!!
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