Advocacy Day: The Main Event (Wednesday)

The truth is that no matter how many times I write this post I will read it and feel like I left things out, like I missed points, like something is missing. Advocacy Day was filled with so much passion, inspiration, emotion, dedication, and anger. 

You read that right. I said ANGER. Not the kind of anger that makes you scream and yell. Not the kind of anger that makes you punch the wall. But the kind of anger that makes 154 advocates from all over the country travel to Capitol Hill to educate Congress because we are ANGRY about our infertility. Sometimes anger can be healthy. It can make people demand change.

154 Advocates from 27 states, 2300+ letter from all 50 states, 160 meetings on Capitol Hill on May 7th 2014.

The 154 advocates present on May 7th was composed of women and men who went through infertility and professionals who treat infertility. Some REs (Reproductive Endocrinologists) traveled to be at these meetings and advocate as well. This was three times the number of advocates that Resolve had two years ago. This was something to be so very proud of. The organizers of this event did an amazing job and really deserve so much thanks.

The morning started with a breakfast and meeting to get everyone ready for the day. They did some talking with us about the different bills/acts that we were presenting and gave us some leave-behind materials to give to all of the congress-people that we would be seeing.

I was honored to get to hear Barb Collura talk to us that morning. She is the President of Resolve and a very inspirational woman.

We also got to hear from Jen & Whitney, the Co-Chairs of the event. They gave passionate speeches that fired us up for the day and, in all honesty, made me cry. Here are some quotes from them that really gave me goosebumps: 

"Being here isn’t easy. It’s easy to not talk about our infertility. It’s easy to feel overwhelmed by our disease and to say “not this year.” It’s easy to let others do the work. In all honesty, this work has been a struggle for me this year. I’ve felt the pull to get on with my “life after infertility.” This hasn’t been easy, even for me.

I am thrilled that there are 154 of us in this room. This is nearly three times as many advocates as we had two years ago at my first AD. But it’s still not enough. What we cannot forget is that if we do not show up, if we do not do what is not easy, no one else will.

We need to recognize that we are privileged to be here today. We get to find our voices today. We get to tell our stories. We get to stand up to the injustices that we see in our healthcare system. How amazing! There are so many who are suffering who cannot be here, who cannot speak out, who cannot demand better medical care, who are alone in this battle. Today we are speaking for them" -Jen

“Today, infertility comes out of the closet. Today, you get to actually do something about your infertility. You will put a face to this disease and educate congress about this healthcare crisis we are all facing. Today we stop being victims of our disease, and start being advocates for our community.

Our work today can’t be an isolated moment in time. It’s going to require some endurance on our part. My step-mother-in-law told me that she didn’t think we’d be having to fight for something like this today, like she was doing back in the 60s/70s. Well, here we are today and it does fall to us to fight for this — let’s make sure it doesn’t fall to the children that we all want so badly.

A silent disease will yield silent results, so it’s going to take ALL of us to speak up! I invite you to find your voice today. You will turn your personal struggle into something more. I’m proud that you are not only here today, but that you guys are also leaders in a grassroots movement of mobilizing your peers to speak up and take action as well. WE ARE BUILDING A MOVEMENT!" -Whitney

We then got to hear from Representative Rick Larsen, the Sponsor who introduced the Women's Veterans and Other Healthcare Improvements Act. He gave a great speech and everyone really felt his passion when he asked us "Should men and women have to choose between serving their country and having a family?"

This photo is of the entire Ohio Constituency. We were ready to go tell our reps and senators all about the Family Act, Women's Veterans and Other Healthcare Improvements Act, & The Adoption Tax Credit Refundability Act.

I cannot even tell you how neat it was to be walking the halls of the Senate and House of Representatives buildings. I was standing in the very place where laws are made. It was inspiring to say the least.

We had a schedule of appointments that were set up for each of us by the Resolve crew. On my schedule were my Ohio Senators, Rob Portman & Sherrod Brown, and the State Representative or my district that I live in, Pat Tiberi. I also attended a meetings with another Rep from our state. Since I was attending as a professional as well I spoke about "infertility 101" and sort of taught the people we were meeting with about infertility and how many of their constituents it affects, that it is a disease, and how costly it can be.

 As I stated before we have 154 advocates from 27 states. This means that we had 23 states that were not represented by advocates BUT we had all 50 states represented in letters. I, myself, brought over 160 letters. Since I wanted to make the largest impact possible I asked to deliver letters to offices for states that were not represented by advocated. They gave me Utah and New Hampshire to also hand out. So that added many more offices and impromptu meetings to my day. I was glad to do it and it kept me VERY busy but I was there to make change and I didn't need time to sightsee.  This photo is with Representative Kuster, we got to have an impromptu meeting with her while we were delivering letters from her constituents. 

 Yep, I even went to Boehner's office, THE SPEAKER OF THE HOUSE!!!

We got to meet Democratic Senator Sherrod Brown from Ohio and talk to him about infertility. He was interested and already supports the Veteran Bill!

All in all this experience was one that I will never forget. As a woman who is affected by infertility EVERY SINGLE DAY it is hard to explain what it feels like to get a chance to fight back. This is something that we get the chance to do normally. We suffer mostly in silence, we have very few people who can truly understand what we are going through, we lose friends, we shut down, but today we opened up.... we spoke up.... we fought back. I sat in front of so many people and I told them my story. I was heard. They may not really understand, many of those aids were too young to understand the yearn for a family or the true impact of infertility but they had to look at my face and into my eyes while I sat there and said "I am Lindsey, I was diagnosed with infertility when I was only 24 years old, I have been through IVF FIVE times, and I have spent over $72,000 out of pocket to try to build my family. HELP ME."

I cannot fix infertility for everyone, god knows I cannot seem to fix myself. But what I can do is fight. Fight for me, fight for you, fight for us.

Advocacy Day 2014: Day 1 (Tuesday)

This year I had the amazing opportunity to travel to Washington DC and participate in Advocacy Day with Resolve, the National Infertility Association. It took place on May 7th and let me tell you... the planning took months!

Back in January they announced the date so me and several other girls who know each other from an infertility support group started planning our trip. For me, personally, this was something that I wanted to attend and support on a personal level and on a professional level (since I specialize in women's health and treat infertility).

Without further ado, here is my adventure to Advocacy Day 2014:

Four of us were leaving from Columbus on the same flight at 7:59am on tuesday morning. We were bright eyed and bushy-tailed and ready to get to Washington!

 Such a short and easy flight with gorgeous views. One hour in the air and we were landing in D.C.

 We headed to our hotel and met up with our other "roommate" who had flown in on the redeye overnight from California. Cindy is something of a celebrity at Advocacy Day, she gave an awesome speech last year that I have heard a lot about and she is just overall a really great and inspiring woman! We grabbed a taxi and we headed to Georgetown because, well..... it's Georgetown!!!

 We walked around Georgetown and took in the beautiful sights, drooled over the town homes, gawked at the shops and of course decided it was time to eat! Eggs benedict, yes please!

 After breakfast we hit the shops (HARD!) and I got this awesome fedora, much to my husband's dismay because he hates when I wear hats. Sorry husband, don't care! I rocked this hat like no other most of the trip.

 We walked down to see the Potomac which was gorgeous and then decided to head for the famous cupcake shoppe that is on some tv show (yep, you read the right, I have no clue what show and I haven't seen it but who am I to turn down a cupcake?!)

 It was quite yummy and the place was swamped!

We then trekked over to find the exorcist stairs! Creepy cool!

 After that we literally walked about 4 miles through the neighborhoods of Georgetown from one end to the other to get to The Dry Bar. The neighborhoods could not be any more perfect, all the brick, shutters, big windows, flower boxes, old detailing, high ceilings, ugh... someone give me the deed to a home in Georgetown!!!! We all had appointments to get our hair done (and a blowout bar) for the reception that Resolve was hosting that night for all the advocates and staff. The Dry Bar was such a neat place and they did a great job with my blowout!

We ran back to the hotel and got changed for the reception and grabbed a taxi to the Senate Building. Yep, you read that right... We got to party in the Senate building in an actual caucus room!

 I got to meet Keiko Zoll, which was awesome! She was so nice and it was crazy to meet her after watching her youtube video and sharing it with others for years.

 After the reception we had dinner reservations at Founding Farmers which is a farm-to-table restaurant. This place is a must if you are going to D.C., it was delicious!

(Wednesday, actual Advocacy Day, coming in the next post!)

My Biggest Fear

This is sort of a tough one for me actually. If you asked me a couple years ago this would have been a very simple answer "Failure" but now that I have a child my biggest fear is losing him/something happening to him. I think this is probably every (good) parent's worst fear though so today I am going to talk about my overwhelming fear of failure.

I know it probably sounds silly and irrational but failure just isn't in my vocabulary. It is not an outcome that I have on the table to choose from. My parents always expected a lot from me and I wasn't rewarded for doing well, if I didn't do well it was "WHY DID YOU GET A 'B' IN THAT CLASS" or something along those lines. Second best was just that, second. 

I have always been competitive and all of my friend will agree that when it comes to a game or competition I am "in it to win it" which I think is healthy and important. Who wants to do things with someone who doesn't put in effort and care about winning?! Certainly not me.

I think, however, that while failure scares the crap out of me I need to learn that it is ok also. I need to learn that sometimes I am going to fail and that it is ok. Infertility was something that really hit me hard because no matter what I did, how hard I tried, or how much effort I put in I could NOT GET PREGNANT. I was literally losing my mind over it. Not only for the obvious reasons but because I felt so out of control and like such a failure. This wasn't acceptable and I immediately, upon realizing that I may just be a total failure at reproducing, signed up for grad school. I was gonna prove that I could succeed gosh darn it!!! So succeed I did. I got into the program I wanted, the quarter I wanted, for the specialty I wanted and I went through it with a 3.9 GPA. TAKE THAT FAILURE!!!!

You know what that taught me? That no matter what I do some things are out of my hands. I went through, and still struggle with, major depression and anxiety. My fear of failure is debilitating. I can spend every moment planning out how to succeed but sometimes I just cannot do it.

So while this is ONE of my biggest fears I know that it is one that I must tackle, and I am trying.

Live & Learn Thursday Link Up- Completeness

Why cant I feel like my family is complete? I wish I could convince myself that "this is it" but I can't. How do people do it? How do they have one child and feel like that is enough and they are done?

Can you learn to feel complete?

I have always wanted three kids. I was an only child growing up and I detested it. I made up fake siblings, I begged my parents to give me siblings, I just wanted siblings! Everyone else had them after all. I told myself that I would never have an only child.

On another note, pregnancy is amazing, magical, miraculous, & breathtaking. I loved it. Feeling baby kicks, movements, hiccups, stretches and rolls was something that make my heart grow two sizes. I cannot fathom not feeling those feelings again. How am I supposed to just erase that longing?

Once you have a baby and you get to see an amazing little person that you created how can you not want to do that again?

These are all reasons why you see most people have multiple kids I am sure. As a matter of fact I feel like most people don't even wait long in between kids many times because the whole experience is just so amazing.

I know that if it was up to me I would already be a mother of two. Then reality sets in, in my life it isn't up to me. I don't get a say in my family size, when I have babies, how I have babies, if I have babies. 

Instead I get to yearn for them, pray for them, beg my body to cooperate, spend thousands upon thousands upon thousands of dollars, fail, fail again, cry, and feel completely defeated. I spend some part of every day watching a pregnant woman and just imagining what my life would be like if I was her, how it must feel to be her, wondering if she even knows how lucky she is.

I am 28, it is the age where everyone is having babies therefor it makes it impossible to just remove myself from the situation. I am truly and honestly happy for others that have babies! It just comes with a whole giant mountain of sad for me. That is what I could say is my tagline for my late 20s "Happy for them, Sad for me".

I so want to give Foster a sibling. I want him to be a big brother. He would love to be a brother. I want to see a sibling bond and experience it. I want to watch them grow and play together. Now he is already 2.5 and the age gap will be so big that they won't be playmates and best friends. Add to that the fact that we cannot try to have a baby right now and I am just so hopeless.

An InLinkz Link-up

Throwback: Infertility is like cancer.

Today I am going to share what I call a "Throwback Post". This was a post from my first blog I ever had. This blog focused on our journey through fertility treatments. This post was prompted by someone asking me to try and explain to her what infertility feels like. I got tons of traffic on this post and it is one that still rings true.

Tuesday, November 23, 2010

Infertility is like Cancer.

Infertility is like cancer. You can choose to fight or you can choose to give up but no matter what you choose the outcome may be the same. You may never beat it. It consumes your whole life and takes away parts of your soul that you cant get back. You can fight as hard as you can and do everything that every doctor even suggests that you try and still not beat it. You may be thinking that if you dont beat cancer you die and this is surely worse... what you may not have realized is that if you dont beat infertility that is like the death of your children, or at least the death of the dream to have children. In no uncertain terms it is the death of your family.

It is easy for people to understand how having cancer consumes your life but people dont seem to quite understand how infertility does the exact same thing. I am a human pincushion. Every day I take tons of medications that make me feel awful. Everyday I am in pain. Everyday I feel lost. Everyday I pray that the fight will end. Everyday I am wondering what else I can do, what else I can change. Everyday I cry because I am so scared that I wont win this fight.

When you have cancer it is so hard to see how your disease is affecting the people you love, what will they do without you, will they be ok? When you are infertile you cant help but think of all the ones you love, do they resent you, the gifts you are taking from your husband, the gift you are taking from your parents to be grandparents, will my husband be ok without kids, will I be ok without kids?

When you have cancer its so hard to watch everyone around you be healthy and live normal lives. When you are infertile it is so hard to watch everyone else have what you dream of and get it easily and sometimes even take it for granted.

I guess what I am trying to say is that I feel like I have cancer. I feel like I am fighting for my life. I dont want a life without children. I dont want a life where I am so depressed and devastated all the time. I dont want to be jealous of other people. I dont want to cry. But, this is the hand I was dealt, so I fight. I fight because I dont know what else to do. I fight because I feel like I was wronged. I fight because I dont know how to give up. I am fighting and I am broken.

(I in NO way mean to say that infertility is worse than cancer. I am trying to explain the way that infertility makes a person feel and affects their life is similar to that of a person with cancer.)

Infertility has taken a piece of me...

I am morally and emotionally broken right now and I am missing a piece of myself.

I am not sure that I can really call this a piece of myself anymore. It feels like a piece of my soul that infertility has stolen from me that I cannot get back. I have deep wounds from the horrifying things that I have been through. The dark places that I have gone are not places that I can forget.

People say that motherhood forever changes you and things you experience as a mother leave lasting imprints on you. I wish those were the prints that showed on me, but my prints are painful ones left by really bad times. Emotional wounds with triggers all around me. I truly think that I have post-traumatic stress syndrome.

Over time after becoming pregnant with Foster I worked really hard to try and move past being the extremely hurt person that I truly was and putting on the happy face that a new mother was supposed to wear. Now, I don't want anyone to think that I wasn't completely enchanted with my son because there are not words to describe my pure and unadulterated joy and love. In addition to those feelings I was a person who was so scared and damaged. How did I get so lucky to have this miracle? How am I here looking at this child that I made when I know so many women who aren't yet? It is like a huge serving of survivor's guilt. I felt so incredibly guilty. All of these people where so happy to surround me with their love and support but I didn't really know how to receive it. I fought so hard and but it was a very private fight. Even though we had shared with a few close friends what we were going through no one was privy to all of the raw fear that we lived with day in and day out.

The panic attacks started the day that we left the hospital. We came home and when bedtime arrived I realized that there was no pulse ox (oxygen monitoring machine he was on in the NICU) for him to wear that would alarm and wake us up if he was in respiratory distress. How in the world were we supposed to sleep? We couldn't! I wouldn't! Cue panic attack. Full blown freak out that included me clutching my baby begging my husband to call out moms so someone was awake with him at all times. When he refused that idea I went into full blown hyperventilating, tear streaming pleading for him to take us back to the hospital. I scared him half to death that night I think. I truly believe that he thought I had lost my mind and postpartum psychosis had set in.

The fear of losing my son was completely overwhelming. No child is replaceable but in my case there was no guarantee that I could even ever have another so this thought was absolutely petrifying. Another day later we ended up getting admitted to Children's Hospital for what appeared to be respiratory distress.... can you imagine what this did to me?

Here is where the honesty and part of my 30 under 30 come into play. My survivor's guilt makes it really hard for me to share how hard I still struggle with infertility and my emotions. One of my 30 under 30 goals was to come clean about our whole IF journey so here it goes... We have been through three rounds of IVF (in vitro) trying for our second child. All have been complete failures. This is something that has broken my will and my spirit. After the 3rd IVF in a short span of 6 months (oct '12-March '13) my anxiety and depression set in like something I've never experienced. Panic attacks took over and things had to change. I had to try to move on and stop trying because I was so mentally and emotionally unhealthy. I was broken, alone, fighting silently (we literally told I think ONE person that this was going on).
I have to wake up every day and tell myself that today I will smile, today I will try to laugh, today I will not let infertility win.

Today I lost. I do not have the strength to put into words what I went through today but it has tested my strength far beyond anything I had imagined.  I cannot say more because I will have another panic attack. Please pray for me, I am shaken to my core and unsure of what to do. I leave you with this amazing video that played in my head all day: