Dear Human Resources,

For the record, my boss is freakin awesome! Really, truly, awesome.

I drafted up this letter, based on the sample that RESOLVE offers, and she sent it off to HR. She is one of the big bosses, so maybe something will actually come of this... The RESOLVE website says 65% of employers who provide infertility coverage said they do so because they were asked by an employee.

Dear Human Resources:

I have been contacted by a Company employee who is suffering with the disease of infertility. An estimated 1 in 8 couples have similar difficulties, so I know that this couple is not alone. On behalf of this couple, and all other Company employees who are silently struggling to overcome infertility, I would like to request that you advise me as to the action necessary to include coverage for infertility treatment with the Company health benefit package. I imagine that this might be a larger issue that requires some attention from Corporate and would appreciate your guidance about who in that organization might be most appropriate to contact.

I have been informed that insurance coverage for diagnosis and treatment of infertility is currently excluded from the Company health insurance plan. I have also been informed that California Insurance Code requires insurers to offer coverage of certain infertility treatments (see reference below), which I assume gives the Company an option about whether or not to include infertility as a covered benefit.

I want to be sure that we are providing comprehensive coverage options that both make sense for our employees as well as our fiscal bottom line. A 2003 Harris Interactive Poll indicates that there is broad public support for infertility coverage; 80% of the general population believes infertility treatment should be covered by insurance. Because of this, I believe that offering this comprehensive health benefit will support our hiring and retention strategies.

Often employers believe that adding an infertility coverage benefit will increase health care costs. However, recent studies indicate that including comprehensive infertility coverage in a health benefit package may actually reduce costs and improve outcomes.

For example, a recent employer survey conducted by the consulting firm William M. Mercer found that 91 percent of respondents offering infertility treatment have not experienced an increase in their medical costs as a result of providing this coverage. In fact, the cost of infertility services as a percent of the total health premiums went down after the 1987 Massachusetts mandate. (Study by Griffin and Panak, Fertility & Sterility, 1998). 

According to the American Society of Reproductive Medicine (ASRM), 85%-90% of infertility cases can be treated with conventional medications. In vitro fertilization accounts for less than 3% of infertility services.

Often patients select treatment based on what is covered in their health benefit plan rather than what is most appropriate treatment. Comprehensive infertility coverage may actually reduce premium expense by as much as $1 per member/per month by allowing employees to choose the most appropriate and effective treatment, rather than more expensive less effective procedures that are covered by insurance.

Medical outcomes are also better for couples whose health insurance includes infertility coverage. The rate of multiple births, which often result in high-risk pregnancies, delivery complications, and extended stays in the NICU, is lower in states that have mandated infertility insurance. Furthermore, the improved mental health and general productivity of employees who are able to access timely and appropriate infertility treatment cannot be underestimated.

I would like to be sure that our Company health insurance plan is as cost effective and comprehensive as possible to meet our staff’s needs as well as our own for a healthy, motivated, productive workforce. Please let me know if you would like any additional information on this issue. I look forward to your reply.


Sincerely,
Foxy's Super Awesome Boss


cc: RESOLVE – The National Infertility Association, 1760 Old Meadow Rd., Suite 500, McLean, VA 22102

Cal. Health & Safety Code § 1374.55 requires health care service plan contracts that cover hospital, medical or surgical expenses on a group basis to offer coverage for the treatment of infertility, except in vitro fertilization. The law requires every plan to communicate the availability of coverage to policyholders. The law defines infertility, treatment for infertility and in vitro fertilization. The law clarifies that religious employers are not required to offer coverage for forms of treatment that are inconsistent with the organization's religious and ethical principles.

Cal. Insurance Code § 10119.6 (1989) requires insurers to offer coverage of infertility treatments, except in vitro fertilization. Infertility, in this case, may be a result of a medical condition or may refer to the inability to carry a pregnancy to term during a one-year or more period of time. Infertility treatment refers to diagnosis, diagnostic tests, medication, surgery and gamete intrafallopian transfer.

I'm Confused by Resolve

I just completed the RESOLVE "Tell us about yourself" survey. It was short and sweet, so get online and fill it out yourself.

But now I'm sitting here with a scrunched nose. I'm confused.
Question number 6 asked:

*6.	Question - Required -How many years have you been trying to conceive?Less than 1 year 1-2 years 2-3 years 3 or more years No longer trying to conceive That seemed pretty straightforward, but then I got stumped by question number 7.

*7.	Question - Required -If no longer trying to conceive, which family building options are you pursuing?  Adoption Third Party Reproduction (donor sperm, donor egg, donor embryo, or surrogacy) Childfree Undecided None of the above

I am desperately trying to conceive. And the only way I can do that might be with donor sperm. But the question implies that I am no longer trying. And in some way I guess that trying implies that there is a chance it could happen any month, but it can't because we don't have sperm.  and all of that is actually a bit upsetting to me.

So I realize that RESOLVE deals with some of the most hormonal delicate sensitive ladies out there, and it must be really hard to chose the right words all the time, but still.... I wasn't expecting to get upset about an 11 question Resolve demographics survey.

*****

I had a dream that we were selected by the Cade Foundation for their 2011 family building grant. They will announce the awards later this month. In reality, I think that our application was really strong, but I worry that they won't understand some of the complexities we are facing with the MFI diagnosis. The application was definitely geared towards female factor infertility. For instance the application required a letter from our RE, even though we aren't working actively with an RE. I ended up sending a letter from both the UR and the last RE we met with.  Maybe next year I can offer a few suggestions for their application.

I am actually a little nervous, because if we are selected then we will have to 'go public' with our struggle. I knew it when we signed up, but it still feels really scary.



*****
I saw my regular dr today for what I think is a UTI, yuk. We had a chance to review my meds and my mood. I feel like she really listened to me and trusts what I am telling her. She suggested increasing the happy pill (lex.apro) dosage to 20mg, and adding Clonaz.epam .25 mg on an as needed basis. I'll still have the x.anax as a fast acting panic management tool, but hopefully will not need to use it as often. She assured me that, assuming this new plan works well for me, that I could maintain it through treatment. She said that we could reevaluate if/when i get preggers and likely stay on it until the third trimester. So that is good, and it feels good to know that I have a local doctor who is committed to helping me get through this.


*****
Ohhhh, and most exciting news - My friend, the sweetest strongest lady who did ivf with mtese a couple weeks ago, emailed me today with the results of her beta. The girl is PREGNANT! The beta was so high that the nurse thought it could be twins!!! There is good news sprinkled along this journey, and friends who I never would have met otherwise. Her success, Dory's success, Julie's success, Kakunaa's Success, Bea's success, Circus Princess success - You ladies give me hope that the impossible is possible.

A new Support Group?

My mom sent me an email a couple weeks ago about a woman who approached her and wanted to start an infertility support group.

My mom runs a parent education program for new moms to attend with their little ones. It is an amazing program that she started twenty five years ago. I could brag about my mom all day long, she really is an incredible woman who has helped so many thousands of new moms grow into beautiful loving supportive parents. Her program is like the one stop shop for all new parents in our community, and absolutely everyone knows my mom. Because she talks about me and my sisters in all of her classes, and has our pictures up all over her office, everyone also knows me.

So anyways, I'd thought a lot about whether or not it would make sense for her program to host an infertility support group. Her program is so loving and supportive, and although it is a center designed for moms and babies, it somehow seemed logical that it would be the perfect place to host a support group. The nearest RESOLVE group is hours away from our little community, and although I don't know anyone else here who shares our struggle, I'll bet that we are not the only infertile couple in town! 

The challenge I struggled with was whether or not I would be able to actually engage with a group that was offered at my mom's program. There would be no anonymity. If I attended, everyone would know who I am. Regardless of agreements of confidentiality, anything I shared would inevitably seep its way into the small town memory where everyone knows everything about you. As much as I'd love to have a group of infertile friends who I could meet and share support with, I concluded that it was a little too close to home for me. And really, even if I could have reconciled the other issues, I just didn't have the energy or capacity to start and facilitate a group.

But then when I got the email from my mom about a lady who was going to start up a local group, I got really excited. I wanted it to start meeting right away. I wanted to meet some local friends who understood, who I could get together for lunch with, or go for a walk with. It seemed so perfect.

So yesterday I opened my email to get another email from my mom with a flyer attached for the support group. I downloaded the pdf. It was a double sided trifold, a little overwhelming to start with. It announced a new Infertility and Adoption support group that would meet once per month. It had a few quotes from women mentioning isolation. And then there was a statement saying that "babies are welcome, as always".

I caught my breath when I read it. I mean, this place where the group will be held is designed for moms and babies, all of their classes and programs welcome babies. It is like the most supportive welcoming place for babies. So I don't know why I was so surprised to see that... but I was. 

I kept reading. There was a description of the group, and it talked about infertility and adoption. Then it talked about parenting issues that adoptive parents face. Then it had a very brief bio on the facilitator that included a statement about how she is adopting a baby thru the local adoption center.

I know that I am super emotionally sensitive, but my god, why am I so bothered by that brochure. I read the brochure and thought immediately and instinctively, this is not a group for me. This is not a group for infertile people. To clarify, this group sounds awesome for infertile people who are at a very specific place on their journey, and it is a place that I am just not at.

The thing is, my mom sent me the flyer to get my feedback. So I replied with a few of these initial thoughts. It sounds like it will be a great support group - for parenting after infertility. (and I totally think that is an important and necessary topic!!) I guess I just feel like it is too presumptuous to assume that we will all need that kind of support. 

This has all settled into my heart and stomach in a funny way. an unsettled way. I think I wanted it to be something else. I wanted it to be something for me. So here I am with a funny feeling. Should I go to the first meeting, and see how it plays out? It might be awesome, and give me hope for the future. Or it might be terrible and leave me feeling assaulted. (Where did that word -assaulted- just come from? I just typed it out, and there it is.)

I'll talk to my mom, she knows the facilitator lady and will probably have a better assessment of her intent, and maybe we just need to change the flyer. Maybe I am just a basket case.

Journals from the Past

I reflected last week on the year anniversary of our first Semen Analysis and the devastating diagnosis we received. I've come a long way since then. At our Resolve meeting last night, yep I went again and it was awesome again, I was surprised by how confident and relaxed I felt. Today as I clean out some old files on my laptop, I opened an old journal to find some entries from last year, right after our first UR appointment. It's pretty powerful to read, and again a reminder of how far I've come on this journey. I wanted so much to share this with someone last year, but I wasn't ready to be so open. This seems like an appropriate place and time to share. Here goes....

I read everyday, but haven't been able to write. I want to contribute to the discussion, but I am struggling with balancing the need to connect with others who understand this experience and a strong desire for privacy. Even with screen names, the internet feels so public. 

We had our first consult with a reproductive urologist. I felt like an idiot, barely able to communicate, and definitely not strong for my husband. I had written out a list of questions in advance and actually handed the list to the Dr. My husband was great - following the discussion and asking relevant questions. I just sat there with tears running down my face. I'd prepared a letter to the Doctor and his staff to have put in our file, introducing my husband and I, reminding him that every interaction with him or his staff was highly emotional and stressful for us, asking for help in understanding the financial cost of any options that were presented to us, etc... and it had our picture on it. At the very end of the consult I handed the Dr the letter and it was like a lightbulb came on. He brought the patient coordinator nurse into the room to meet us, gave us the card for the financial counselor, and encouraged us to make an appt with the office counselor. The doctor was great before the letter, but after reading it remembered the humanity of us as a couple who were scared and in pain.
We are now waiting for results of hormones and genetic testing. I am putting all of my thoughts into hoping that the results show that we are lucky enough to move forward with a TESE, and trying to brace myself if that is not an option.
Speaking of bracing myself, I got a massage last week and realized that I was actually physically bracing myself for some sort of impact. As I started to relax, I started crying. I want to be strong for my husband. I need to hold it together at work. I honestly don't want to talk about any of this. But it is constantly swirling in my head. I am constantly in a state of apprehension. I am constantly on the verge of tears. I didn't realize how much I needed to be cared for. and how important it is going to be for me to figure out some ways to take care of myself - to create safe places where I can let my guard down. 

The physical exhaustion I've felt since getting the first SA results should have been a clue as to how much energy I am exerting to hold it together. Being at home with my husband is easiest. Being at work is okay if I can be focused on a specific task. I told my boss and direct co-worker that we had “some medical stuff going on... I felt like a zombie... I didn't want to talk about it.” They've been pretty respectful, but I know that they could ask about it at any time, and I hate that. With my irratinal emotional breakdowns and random days off for doctor appointments, I had to let them know that sometime was up and that it had nothing to do with them. Being around my one friend and two family member who know is okay. They want to be supportive, but I know that they can't understand. At least with them I know that I don't have to lie or pretend that everything is okay. Being around  friends and family who don't know is exhausting. I swear that talk of getting pregnant or babies comes up in every conversation. When we were trying, I had no problem lying and telling people that we were going to wait until I got better insurance, or until my husband got a better job, or that we just weren't ready yet. We'd wanted our trying to be private between us, as it is in fact among the most intimate and private activities that a couple ever engages in. Apparently I was so good at these fibs, when I recently told my best friend that we were having some problems, she was shocked. Ironically she was happy that her 22-week pre-nate wouldn't have to wait another 5 years for a friend, while I was considering for the first time in my life that I might never have a family. For whatever reason, when the topic comes up now I feel completely exposed and raw. and unequipped to participate in the discussion.  It takes everything I have to hold myself together so as not to let on that I want to run and hide and disappear.  We are married couples in our early 30's, so it really isn't an inappropriate subject. It's just that everything about it all of a sudden, to me, feels so invasive and out of control and, inappropriate.  I now brace myself for this part of the conversation everytime we hang out with friends. And it takes ….so.... much …. energy. 

Someone said that the first days and weeks after getting a zero SA are the worst, but it does get better. Thank you for that wisdom and encouragement. I think that I cried more in those first two weeks than I have in the past five years. For some reason driving was especially hard. Maybe the car is a private,  space where I was safe to let my guard down. I drive to meetings everyday at work, and I must have cried almost everytime I got in the car. Crying is exhausting work. I may have been physically present at these meetings, but I assure you that I was not mentally present. I was exhausted. And I couldn't eat. I've always had a hard time eating when I am under stress. It is so hard to swallow. To swallow the food, and to swallow the truth and reality of everything else that is hitting me. Besides, my stomach was in knots. Food really was not appealing. Breathing was hard too. It was as if I had to remember to breath. And as if the sobbing had hurt my diaphram, causing it to seize up everytime I exhaled. As I write this I realize that this has passed and that I can breath normally again. Reminds me of the saying, this too shall pass. 

This week has been much better. I had a full day without tears. I worked past 5 a few nights and didn't feel as thought I would pass out from exhaustion driving home. Looking back I think it started last Sunday at breakfast where I was able to eat a full meal. It is crazy to me how severely the stress of this diagnosis has physically affected me. It is unreal. 

Resolve Meeting - It was Awesome

I did it. Finally. I went to my first RESOLVE meeting last Sunday. It was wonderful. WONDERFUL.

My mom and I were going to be near the City to visit my grandpa for Fathers Day. She'd offered to go with me to a RESOLVE meeting in the past, and so I asked if she would be willing to go with me. We had a nice drive up in the morning. On the drive she asked how I was doing and how the hormone therapy was going for ML (my lover). I told her, again, the timeline and options that await us in the Fall. I adore my mom and she is more supportive than I could have ever asked for... but, it feels like I have to repeat myself and tell her again and again the 'plan' and the 'options'. In reality its probably only been a few times, and I know it is a lot to expect that she be able to remember all the details after hearing them once, but still... I just wish that she 'knew', without me having to say anything at all.

We had a nice afternoon with my grandpa. My cousins also came to surprise him. I have two teenage girl cousins who are just begging for trouble. Last time they came to visit me for a few nights I had to have the birds and bees talk with them, complete with a trip to planned parenthood so they could get the shot. Oh My god I would just die if one of them got pregnant. Cousin #1 confessed that she tried pot for the first time the week prior. I made her pinkie swear that she wouldn't do it again until she came back to visit me again.

Moving on to the best part of the day. My mom and I arrived at the RESOLVE meeting. It was held at a facility that provided advocacy and information about women's health issues. We were the first to arrive. The leader welcomed us and showed us to the circle configuration of cozy chairs and a couch. She was really pretty and nice. There was a coffee table with Resolve materials laid out. My mom picked up one of everything and chose a comfy chair seat. I took a portion of the couch across the circle near the leader. We made some small talk and waited for the other ladies to arrive. She mentioned that some of the other male factor couples would not be attending that evening, but that there were a few women considering donor eggs.

I honestly can't recall the order in which people arrived or exactly how the conversation came together. I was really nervous, but I could tell that a few of the other women were too. There were 8 of us in total at the meeting, including me and my mom. The leader made some introductory comments, read a poem (or maybe it was a segment from a book), then suggested that we go around the circle to share. I was the first one to share. It was great, but in all honesty overwhelming at the same time. I shared, then the other women shared. Seeing them nod and tear up as I spoke was... so... validating, reassuring, comforting... they 'knew' what i was saying, in that way that I didn't need to give the background, they just knew. They were right there with me. And then they spoke, and I nodded and teared up. I just don't have words for the experience. I felt like, like I didn't want to leave, like I wanted to sit with these girls for hours, and talk, and listen, and nod, and cry.

We did stay for a little bit after the meeting, a few of us. Two other women are using the RE that I had my initial work-up with. They love him and the clinic, which was nice to hear.

It was a big deal for all of us to be there, it was obvious by the wringing of hands and cautious smiles. My anxiety level was high for the entire meeting, but I felt like I just might have found a place that could be considered 'safe' to let down my guard. I have to say that again, I just might have found a group of women and a place where it is safe to let down my guard. Can you hear my exhale as I write that?

I can't wait to go back again. It is a four hour round trip drive on a Sunday night, but I can't wait.  the next meeting falls on the fourth of july holiday so it is being canceled and the next meeting won't be for a month. I will be there.

(Don't get me wrong, you gals RAWK my world, but until I can sit in a room with you for a few hours, the RESOLVE group is going to have to fill that void!)

* * * VEGAS SPA RECOMMENDATIONS?
I'll be in vegas this weekend, visiting family. I would LOVE to spend some time at a Spa, one where I can spend a portion of the day wearing a robe and slippers, order a drink, sit by a pool, soak in a sauna, and get a massage or some other decadent treatment.  Please let me know if you have any suggestions! Or if you live near Vegas and might want to meet up with me at the Spa :)

RESOLVE meeting in my future

Its all set. This sunday. After visiting my grandpa, my mom and I are going to my first RESOLVE meeting. The nearest group is a 2 hour drive from my home, and they meet at 7pm on Sunday nights, making it a logistical challenge to attend. Besides, I didn't want to go by myself, but didn't really have anyone to go with. I wrote to the Resolve lady at the start of the year, and have been getting the meeting reminder emails ever since. And Finally, I am going to go. 


I have to thank Alison, The Privileged Infertile, for helping me realize how much I crave a personal connection. She is working on a personalized blog design for me (I am so excited!) and called me to talk about what I want. It was so great to talk to someone else who is going through this. SO great! So great, in fact, I am going to finally attend a Resolve meeting. Thank you Alison!


Hopefully my meeting won't be like Laura's at Bumpy Journey, attended only by a lady gnome.  I still think that Laura is a HERO for attempting to lead a group. Someday I hope I'll be as awesome and strong as she is right now. 


On another topic, I am really loving all of the posts about Fathers Day. I had no idea that this would be such a hard day for me. The cards at target caught me so off guard, but I am feeling now like I am in very good company. These posts are so validating and make me feel like I am not alone.  

Little Bits of Advocacy

My employer's group health insurance plan specifically excludes coverage for anything related to the diagnosis and treatment of infertility. I live in California and work for one of the largest employers in my County. I work for the boss, well, one of the bosses. If anyone can fix our insurance, she can, right?


I told her about our struggles last summer, when I was in Zombie condition. She is wonderful, understanding and kind. She knew when she hired me that having a family was my number one priority and that I would likely end up working part time at some point to be with my kids. She says the nicest things when I apologize for being distracted by our struggle, like, "Foxy, you are more effective now than most people when they are at 100%." It is nice and I know that she would do anything she can to support me.


I am super private about our infertility with everyone else at work. I'd originally called HR to ask about the options for changing our insurance, but didn't feel comfortable going into any details about our situation. I work very closely with the HR folks on work related stuff, and really don't need them knowing my personal business. I've been pondering how I can help my boss ask the right questions without revealing that I am the reason why.


The RESOLVE website has a generic letter to employers, and encourages all of us to send the letter to our employer and encourage them to change their insurance policy. There is apparently good research to show that infertility coverage actually results in lower premiums, higher employee productivity, etc...  So I took the letter, customized it for my workplace, and drafted it as though it was coming from my boss at the request of an anonymous employee. I've had the draft letter on my desk for two weeks and finally took a deep breath and pitched it to my boss on Friday. She could tell it was a hard thing for me to ask her and let me change the subject immediately.


I'd worked with a state lobbyist in the past on maternal health issues. She called me earlier this year to see if I would be willing to testify about those issues in the Health Reform  hearings. I let her know that I would be happy to testify, but confided that it would be hard considering our current struggles. Apparently she is also a lobbyist for fertility doctors. She told me all about some efforts that were underway to try and convince insurers to include coverage for IVF as a way to save on NICU costs. An insurer who covers IVF can limit the number of eggs that are transferred, lowering the 'risk' (or so they call it) of multiples. Multiples are more likely to spend time in the NICU, which is significantly more expensive than IVF.  Someday I hope that I will be strong enough to testify in support of this rational and logical approach to insurance coverage.


The thing is I just know that My Lover and I are not the only ones struggling with this. If one in eight couples experience infertility, then there must be many more in my workplace who are silently suffering. I am in a position to change things. We are all in a position to change things, when we are strong enough to speak up and have our voice heard.