Resolve Advocacy Day

Last Thursday I had the privilege to volunteer for Resolve's day of Advocacy, to lobby on the hill for infertility related issues. Besides being a part of a great cause, it was an amazing experience to find myself among a group of women who have fought so hard to build a family. The stories and passion these women shared with each other and with the various legislative aides and representatives we met with was awe-inspiring.

Our mission was 3-pronged. Get representatives and senators to sign on to the Family Building Act of 2009, gain a voice for infertility as part of the health care reform conversations and a $250,000 appropriation for the CDC to create a public health and infertility action plan. I had the opportunity to "sell" these ideas to 4 different offices - Senator Cardin (MD), Senator Spector (PA), Senator Burr (NC) and Representative Van Hollen (MD). Though I was officially representing Maryland, as we had such a large contingency many of us participated in various other meetings from different states to support our peers. Specifically for me PA and NC each only had one constituent who was able to come to DC for the day so I was there to be another voice for them and ensure they didn't need to walk into a room alone.

A little bit more background for those that are interested. Currently, only 15 states have some level of regulation on health insurance that requires levels of infertility coverage. However, many people are unable to tap into their state mandates, given the crazy specific language and criteria. For example, one woman I met on Thursday told the story of her spouse he has a rare genetic condition that he has no sperm - no surgery/extraction can help there is nothing there. However, Maryland's mandate will only cover infertility procedures when the sperm of the male and the eggs of the woman who are married to each other are used. They are getting no insurance help and must come up with $25,000 to try even once for a successful pregnancy. Alternatively, many women with fallopian tube issues have surgeries to remove scar tissue or repair tubal issues. While no affective link between these surgeries and increased fertility have been demonstrated, these $30k plus surgeries are almost always covered by insurance. However, wouldn't the money be more effectively spent on 2-3 IVF cycles that have over a 70% success rate at that point? Even with the strict guidelines of some of these state mandates, states with infertility coverage have shown decreased overall health care costs than other states. This is partially attributable to the fact that additional fertility coverage usually leads to more appropriate medical conditions, including single as opposed to multiple births. Less medical procedures and medications are required for a successful pregnancy, less costs are incurred during the pregnancy and delivery and there are less long term costs on the system. Did you know a premature baby is automatically put on medicaid? One woman shared that the 21 days her twins spent in the NICU cost over $100K - not to her pocket though - to the state medical system. Additionally, uncontrolled procedures, like IUIs, as opposed to IVF have a much greater incidence of multiple births, yet cost up to $10K less, so without insurance coverage many people try to go that route.

The Family Building Act proposes to close some of these loopholes by creating a federal mandate that any insurance that provides OB/GYN care provides full infertility coverage. Let the appropriate medical decisions be made between the doctor and the patient and not based on finances. Write to your representative and senator and ask them to support the Family Building Act of 2009.

Enough ranting for the moment, more to come later.

In response to a previous comment

My apologizes for a delayed response - I need to figure out how to have the site alert me if there is a comment. Second - I wish you and your husband success on your family building journey.

To your question - personally, I would be hesitant approaching someone that I wasn't close with and sure that they were dealing with the same issue I was. There are many reasons why people might not be having children - economics, education, job issues or medical. Without knowing which you run the risk of potentially offending the person. My two suggestions would be if you have a friend who is closer to this person maybe they could act as an intermediary for you. Alternatively, if you are comfortable being open just start talking about it in front of anyone and people will find you. I can't tell you how many people have come my way even indirectly because I made a comment to someone else. And I'm talking along the lines of - we're going through infertility treatment, I had to get up so early this morning for monitoring for treatment, we're working on building a family but need some medical help - anything you feel comfortable with.

Alternatively - find a support group through your clinic or Resolve - they might not get the community you are coming from but they get what you are going through. Ask the mikvah attendant - when I first wanted someone to talk with I called up the woman who runs the local mikvah and she put me in touch with someone. Join an online support group - ivillage, soulsisters for pcos, conceiveonline, atime, etc.

I hope some of this is helpful to you and I am more than happy to talk with you via email or phone - you can reach me at irbranda at yahoo.com.

Good luck on your journey.

Popping Buttons

The things we go through when struggling with infertility - most people probably think of the emotional turmoil, the financial ramifications (no big vacation for us) and the many doctor appointments and medications. Me, I think of popping buttons; shirt buttons that is. The joy of fertility medication is the effect it has on your body. For me - one of those includes a "little" swelling on the top part - I can't just pull anything out of my closet to wear, but need to think about the looser clothes - one's without buttons down the middle. Though it is humorous to try on a top you always thought fit you, close the button and have it open itself immediately - luckily I only tried this twice before giving up and realizing that shirt can go in the back of the closet now. The emotional, financial and intimate relationship with the appointment desk at the doctor's office are all still there - though we've added the popping buttons - the need to provide some lighthearted amusement to the whole process seems to be built in for our enjoyment - maybe I will try on another button down shirt tomorrow...

Gambling for Treatment

So within about a 15 minute drive of the Las Vegas strip there are 4 different fertility clinics. How do I know this you might ask? I was privileged enough to visit one of these "fine" institutions while in Vegas for a conference - yes, fertility treatment does not stop for anything. So it took calling 3 of the clinics before I could find one that would see an out-of-town patient, and apparently they assumed I was going to go gambling first so I could afford a visit to their office. Though that only would have worked at the $5 black jack table if I won every hand for a couple of hours. Amazing the Vegas office was twice as much as my DC office - and made me wait even longer. There was one thing I noticed that was very interesting. In DC I am usually the youngest looking patient in the office. In Vegas, I seemed to fit right in - whether people on the west coast just look younger or the multitude of wedding chapels gets people thinking about infertility at a younger age - I couldn't tell you - but in an odd way I felt a little more comfortable sitting in their waiting room (that was of course until I got the bill). The bottom line is, in dealing with infertility treatment the end result might be a gamble, but the treatment we never gamble with. Many people may be able to relate to the emotional side of infertility, but what they don't get is how it so controls every aspect of your life. I couldn't stop seeing a doctor for ever a couple of days, I checked in with the TSA about how to bring my needles and medication on the plane, I always have to make sure when it is time to give myself my shot I am with my medication, supplies and supposedly in a convenient place to do it - though I was privileged to give myself a shot on a turbulent plane. I refuse to gamble for treatment, besides the economic impact, the chance that there is something in my power to do - I must push full forward. The result is not up to me and I recognize that gamble and the payoff for winning...that's is something I would gamble all my money for.

I Love my Target Pharmacist

So there are many things one comes to realize while going through infertility treatment - for me, one is that I love my Target pharmacist. We've been using the same pharmacy for more than two years, and though initially I didn't realize just how great my pharmacist is - I definitely do now. So what makes him so special you might ask. He cares. Many times we feel like we are going at this alone, even with seeing the doctors and nurses and talking to friends - those relationships are so tied up with other issues/committments that it doesn't always come across as the support that we sometimes crave. But our pharmacist, he has nothing to gain, yet he is sensitive and caring to what we are going through. He wishes us luck when we pick-up our next cycle of medication and most recently is holding our medication for us in the hope we are able to start another cycle - no questions, just sensitivity and support. It's a weird place to find comfort, but after hearing bad news from your doctor or the excitement of being able to try it's nice to know there is a friendly, caring guy thinking about not just my medicine, but us.

Pineaple Candies - The newest miracle drug

Newsflash! Have you heard? The latest infertility medical drug has just been released - and you'd never guess what it is - pineapple candies! So, you are probably wondering what medical journal I found this in and what pharmacy is willing to fill a prescription for this miracle drug. It's from the Israeli Journal of Segulas - never heard of it? - let me tell you all about it. We Jews like omens and symbols. We'll drink the wine after a bride and groom in hope of finding our own mate, we'll change someone's name if they get sick to include words meaning life and healing and we eat pineapple candies. We recently "came out" and have been open about the struggle with infertility we are going through. So my mom told one of her good friends who also dealt with infertility many years ago and remained active in the advocacy area. The story is there is a grocery store in Israel that apparently has a chair inside of it and anyone who has sat in the chair has merited to have a child. The problem is we are in Maryland and the chair is in Israel. The solution - buy pineapple candies from the store and they substitute for sitting in the chair. So my mom's friend sent me 12 pineapple candies - not a bad dosage. The tough question now is - when to eat them?

Insensitivity Abounds

Why do people feel the need to point out to you that you don't have kids yet? I know that very well, thank you very much. Yet certain acquaintances of ours feel the need to mention this fact to us every time we see them and the problem is they are just acquaintances. We have begun telling a lot of our closer friends, but how do you tell an acquaintance - "hey, by the way please don't remind me that I don't have kids - I've been trying for almost 2 years." I don't need to be continually reminded that there are people my age in the community who are on number 2 or 3. I don't need the topic of conversation at every social event to be who is expecting, how everyone is feeling and how many of their clothes they have grown out of. I know I was probably like some of those people before, not realizing how insensitive and stupid things we say are and it is a trait I am definitely working hard to overcome, whether it is about having children, jobs, religious practices or anything else. I am trying to come up with a response that I can share with the random insensitive comments we receive, but so far nothing. And the most frusterating thing is I feel like I am starting to avoid situations where I feel like this will come up - and that is just annoying. I feel like I want to be on this mission now to awaken people to their actions, but at the same time I don't want to be the one everyone feels bad for and stops talking while in the room - so I just avoid at the moment, which I know is not healthy, but what else can I do?

Where has the doctor gone?

So we are taking a month off from treatment. Between traveling for almost 2 weeks for Pesach and insurance issues we are forced to take a break. You don't realize until you stop going to the doctor how integral to your life it has become. Waking up over an hour earlier on a regular basis to make sure you get to the doctor before work, showing up at work late because the doctor was running behind - it becomes part of your schedule and habit. I am at a lost of what to do with myself when I am not keeping track of which arm they should prick so I don't have black and blue marks all over. I'm not spending my morning anxiously waiting for a call from my nurse letting me know what the next step is, trying to be productive at work but not always succeeding.

It is such a change from how you imagine married life. Growing up in an orthodox home sexuality was not really discussed much in the home or at school. You get the basics eventually, but mostly it is a taboo topic, whispered on the side if spoken at all. I've become so desensitized to that - sexuality has become a regular topic of conversation with the doctors, nurses, rabbis and even between myself and my spouse. It has become a condition, an issue you must treat. I've learned so much about the female body (and the male's) in our journey through infertility, information that I definitely feel I would have benefited from knowing earlier. We are the most important advocate for ourselves, and we must arm ourselves with as much information as possible. Even when you are not in the midst of a treatment cycle, we must continue to learn about the obstacles we are facing. I am fortunate that I have found a practice that I feel comfortable with, I have a nurse who is always responsive to my questions. However, where has the doctor gone? In some ways there is a piece of that role in me. I would never assume to know what is the best treatment or what dosage to take, but I do know how it makes me feel, I do know the side effects I might experience and the emotional strain my body is enduring.

But, we are taking a break - the doctor is still in their office, hopefully sharing the happy news with some couple that their cycle was a success. But for us, for the moment, we have left the doctor at their office. We will hopefully return after Pesach (insurance issues permitting), but for now we will just be - no doctor visits, blood samples to give or shots to take. Though it might seem like an ideal situation, in all honestly I miss the doctor, I miss feeling that I am trying to do something, trying to bring us closer to having a family.

Flowers and Fertility

Our jewish belief tells us that are names become a part of us, signify who we are and speak back to the heritage we came from. We look to the biblical stories to learn about the traits we can emulate, the people we can become. I have the middle name Rachel - our matriarch who stood by her husband while his other wife and two concubines had children, but Rachel had none. The torah states that Rachel was jealous of her sister. Upon further examination it appears that she was jealous of the characteristics and merits her sister must have that allowed her to have so many children. Rachel understood that the ability to conceive and carry a baby to term are not just about a sperm and an egg meeting, but about a miraculous gift that God gives us. It has taken me some time to come to this realization, and it is a battle that I still struggle with.

I think my first IUI did it for me though - multiple eggs, the right number of sperm and a nice thick lining - but the day of my pregnancy test yielded a no. Medically, all seemed to be going well, but there is another step that needs to occur, that we can't control - the miracle of every aspect coming together - its not just the measurable numbers. Rachel was jealous of whatever "it" was that allowed the miracle to occur for her sister and not for her. I look at other people and I am happy for them that they have been blessed with children in their lives - but at the same time there is that tinge of jealousy - why don't we deserve the miracle of conception - what don't we know that is preventing us from having a family?

The problem is you start to ask yourselves these questions and it leads you down a dangerous path. Rachel at points was grasping for straws - she gave away a night with her husband for dudaim - a flower that supposedly promoted fertility; she screamed at her husband, 'if you don't give me children, it is like I am dead." But where did that lead her? What did she learn about her life that she didn't already know? How can you live second guessing every action you make? Maybe if I am just nicer, pray more, keep more mitzvot, do more acts of kindness...but where does it stop? Where do you stop questioning your life and start living it? I catch myself sometimes thinking about what could be, how my life could be different if I had that "it", what does everyone else around me have that I don't, but that doesn't get me anywhere besides feeling down and empty. For whatever reason my husband and I are not pregnant, nor have a child already. I keep the hope that one day we will have that "it" we will witness the miracle of conception not through family and friends, but with the beginning of our own family. Rachel did have a child and I hope that at least that part of her story becomes my own.

Did we leave Egypt yet?

Soon Pesach will be upon us, we'll go home to our parent's house, eat matzah for eight days and be surrounded by family. But how do you deal with family when you are the only one without kids? One sister has three, another with five (though they won't be joining us) and a brother with one - who happened to get married a full year after my husband and I.
Do you ever get the belly look from people after they ask you how long have you been married? 3 years you answer them - the follow-up question - do you have any kids? and the moment you say no there the eyes go right down to the belly to check for a bulge. And then there is shul - you go to shul and low and behold what is going on, did you miss the notice? It is the grandchild parade - every Bubbe and Zaide coming in to show off their finest nachas (the grandkids that is) and you are just sitting their davening. We say in the hagadah - in every generation each person is responsible to see themselves as if they left Egypt - I think it will be a little easier this year. The significance of leaving Egypt was gaining a level of personal freedom, yes we follow the Torah and its laws, but we are not oppressed. To me, oppression is the feeling of being trapped within yourself - you don't have someone to confide in, you have no where to belong. That is what infertility feels like, you are the one left with nothing to contribute to the conversation while everyone talks about which ob/gyn they are using, when they are going to take birthing classes or how much weight their baby has gained. Who do you confide in when all the other Bubbe's in the shul are looking at your mom wondering why her children aren't giving her the nachas of a grandchild? Pesach will be a trying time, pasting on the happy smile for all the family and social settings - I think I'll be able to sit at the Seder next week and have a little bit more of an appreciation for what our ancestors endured - my burden may not be the same physical labor as they experienced, but it is a great burden nonetheless.

Everyone is Pregnant

Did you ever enter a room, look around and notice that everyone is pregnant or holding a kid? It hit me this week as I participated in a brit milah; my husband and I were asked to carry in the baby for the ceremony - it was a decision we took some time making - our friends had the baby Saturday and they happen to be are only friends in our community who know about our struggles with infertility - Monday we learned that our IUI did not work - it was a rough day, wanting to be happy and excited for our closest friends, but knowing that you spent another month hoping, praying, waiting, examining your body to see if everything was changing, second guessing if you were feeling queasy because you were reading on the train or your hormones were acting up. That same day our mailbox yielded our Resolve magazine. One article in particular caught my attention - the author discussed the need for couples dealing with infertility to be open and honest about what we are going through - keeping it a secret alludes to a level of shame we attribute to what we are going through and this prevents us from receiving support and sensitivity from those around us. So we decided to take the plunge, we were going to carry the baby in, an honor generally reserved as a segulah for those having difficulty conceiving as a merit for them to have a child. We thought this might be a way to come out in the open, but not have to approach everyone and say, "hey, we are going through infertility treatment." Except it didn't work, those who caught on were so busy talking about their own pregnancies that they didn't even realize what had just happened. Plus, there were all the people who didn't even see. So instead we spent the weekend surrounding by bulging tummies and friends discussing their number of trips to the bathroom throughout the night and how much their belly moves. It really hit me over the weekend that almost everyone we know, all our friends and acquaintances are expecting or already have kids. Where does that leave us?