Tuesday, May 24, 2011

happy 3rd anniversary

Three years ago today, I married my best friend.

The love of my life.

The father of my future child.

Joey: I love you very much. Thank you for putting up with all of this over the last three years. Today, I don't think about all of our failures. Today, I think about our future success - our baby, who is out there waiting for us.

I can't wait to embark on this new adventure for you. There's no one else I'd rather have next to me on this crazy ride.


Monday, May 23, 2011

the room is (almost) empty

We've been talking about it for months, but we never had time. How we needed to clear out the nursery to make way for what's to come: baby furniture.

It finally happened last weekend. We (and when I write we, I mean Joey) loaded up the Jeep last Sunday morning with all of the furniture we knew we would not longer have room for and dropped it off at Goodwill. We went to IKEA to price some nursery storage items, and we bought some extra storage for the guest room for the items that we moved out of the nursery.

We already know that we need to get rid of the papasan chair, and we are still debating on the couch. Joey's dad is coming over on Friday to, "paint the baby's room." (His words. It's weird - we call it the nursery all the time, but it's surreal hearing someone else call it the baby's room.) After that, our plan is to buy the crib we know we want, put it together, and then see where we stand as far as space is concerned.

We go on vacation at the end of this week. When we come back, it's crunch time. Time to start the serious nursery purchases. Time to start filling our paperwork and making appointments to see our doctor. Time to solicit people for letters of recommendation. Time to get together all of the pictures and wording we want for our profile.

I remember thinking late last year (October/November) that August was too far away. That not turning in the home study paperwork until August would be absolute torture. And now? August is practically here.

This is the beginning of what's sure to be a crazy roller coaster ride. Who's in the car with me?

Wednesday, May 18, 2011

my partner in crime

Yesterday, when I came home from work, my husband asked me to pull up CNN.com and read an article he thought I would appreciate.

The article was an interview with Marc Sedaka, based on his book, What He Can Expect When She's Not Expecting. If the book is anything like the article I read yesterday, it's something that every man should read. But this is also an area that we, as women (I'm assuming that I have no male readers here beyond my husband - my apologies if I do), need to recognize our role in.

Let me try and explain this without royally pissing off my fellow feminists:

People sometimes say things to me like, "your marriage is perfect." Well, I have news for you: it's not. My marriage is not perfect. Joey and I fight. We sometimes go to bed angry. He doesn't always get what I'm trying to say, and I don't always get what he's saying. Marriage is hard, and when you add infertility to the mix, it gets harder. You don't hear me talk about it and you don't see me write about it, because it's none of your business. I don't air my dirty marriage laundry for all to see, and there's a reason for that. I LOVE my husband. I respect my husband. Therefore, I don't share his little annoyances . . . like not pushing in his chair at the table. And, thankfully, he doesn't share my faults . . . like sometimes not washing the coffee pot before I leave for work. :)

When we were first struggling with infertility, Joey wasn't the most understanding husband. He often didn't know the right words to say or what to do. I used to question whether he actually cared, and I did it to his face. I would ask, "WHY don't you understand?" But the truth is, I didn't always try to get him to understand. I didn't make it easy for him. I didn't try to explain myself or put things into terms that he would understand. I often went to bed in silence, not knowing how best to describe how I was feeling.

I made the mistake of saying “I” instead of “we.” I would say “me” instead of “us.” I still do sometimes. It’s not intentional (though sometimes it is because I want to speak for only myself – rather than anyone else - if what I'm saying is controversial). It’s not meant to be hurtful or alienating. We’ve all done it.

In short, I took ownership of our problems and bottled them up. Unless, of course, I was spewing it out on Twitter or in the blogosphere (which, I found out later, hurt him - "How can you talk to other people about this and not me?"). I did it because I felt like talking to him was burdening him. I felt like a broken record. I thought he would get angry or sad. I had all of these preconceived notions about how he would react to things. I didn't even try. As a result, the more closed off I became, the more closed off he would get.

Finally, I asked him to go to a RESOLVE meeting with me. It took a little bit of arm twisting, but he went. And he TALKED. He talked so much, I couldn't get him to shut up.

That's when I realized: I was enabling this behavior. I was helping to promote this environment of silence, this lack of communication. I was creating this barrier that he didn't know whether he could break through. It wasn't just him.

It was me, too.

I'm not saying that it's this easy for everyone. That all it takes it to get your husband to go to a support group meeting or start rambling about every little thing that upsets you about infertility, expecting that he magically "gets it." I know it isn't that simple. Some marriages don't survive infertility. The lines of communication get broken. People grow apart. They stop understanding each other or trying to understand each other. They get these ideas in their heads about what their partner is thinking or feeling and let their imagination run. They create a forcefield of anger and sadness around them to prevent themselves from getting hurt.

Yes - some of the conversations did and still do hurt. We don't see eye to eye on everything when it comes to each other's feelings. He still can't understand why I get upset when someone announces their pregnancy. I still can't understand why he thinks I SHOULDN'T be upset.

But THAT'S OKAY. At least I talk about it now, and so does he. Even if we don't agree on everything, it still comes out onto the kitchen table - out in the open. It has to. Because if it doesn't, we can't have a child together. Why should I have a child with someone I can't even talk to about my feelings, and vice versa? It's doing a disservice to each other and to our future child.

Reading the article on CNN reminded me of how grateful I am for my husband, but also how grateful I am to myself for realizing what I was doing wrong. Trust me, I LOVE to be right. If there's a person who wears the pants in the relationship and who always wants to win an argument, it's me. I don't bow down to my husband, and he doesn't expect me to. But we need the tips from this article as much as they do. We need to consider why they are reacting the way they do. We need to share the burden with them. We need to put our estrogen aside and realize that we don't have to take all of this on by ourselves.

We don't have to take it on alone.

Tuesday, May 10, 2011

things aren't always black and white

When I had my laparoscopy a little over a year ago, I had irrational fears about what the doctor might find once he cut me open. An alien growing inside of my uterus. A testicle instead of an ovary. A giant block of cheese wedged somewhere in my abdomen (because Joey teases me incessantly about eating too much cheese). I had more realistic hopes. Like the doctor finding a definitive reason why we couldn't get pregnant.

Instead, I ended up with no clear answers and even more questions when the next two IUIs turned out to be massive failures.

It's strange, but I envy people who can say with confidence why they can't get pregnant. Their tubes are blocked. They have no sperm. They have premature ovarian failure. Their uterus can't support a pregnancy. These are easy things to explain. Instead, when I am posed the question of, "Why are you infertile?" my answer is always a huff of laughter and, "Where do I begin?"

And as if there weren't enough questions already swimming around my worrisome little brain, this latest doctor's appointment only added fuel to the uncertainty. For so long, I thought it was difficult - practically impossible - for my ovaries to work properly. Yet, here they are, working right in the one situation where they absolutely shouldn't.

Not only was my body in disarray, but so was my mind.

What if this entire time it was actually possible for me to be pregnant? What if the chance was there all along, but the methods were wrong? What if it was simply a matter of some weird hormone combination that would whip my reproductive system into shape?

This experience brings questions to the surface that I didn't want to think about. Questions that I thought I'd dealt with and moved past. I don't WANT to be pregnant. So why was I thinking about it on Friday? Thinking about it made me feel wrong. Guilty. I know in the depths of my heart that pursuing adoption is the right choice for us, and I still second guessed myself.

But maybe it's not so black and white. Maybe it's not so cut and dry. Maybe it's not just "adoption and nothing else" for us. I know for certain that I don't want to do IVF. But what if that means, down the road, we try a few more IUIs. What is so wrong with having two children in our lives, just arriving to us in different ways? What is so wrong with adopting a baby and then getting pregnant with a sibling?

I feel like I'm finally coming to terms with this idea of building a family in various ways. That I don't need to have children one way or another way. That just because I don't want to get pregnant now, doesn't mean that I won't want to try in another few years. I need to focus on the moment, rather than what was or was not right or possible last year and what may or may not be right or possible in the years to come.

I don't know for certain that I can even get pregnant. We may never know. But right now I know what I want: I want a child, and I want that child through adoption. I don't have the strength in me at the moment to try and get pregnant. When it comes to my reproductive system, my physical health is in no shape to carry a child for nine months. What I want right now is to find the baby who is out there waiting for us to bring him/her home. No more hanging onto dreams of a miracle conception or a healthy pregnancy.

At least not right now. Not in this moment.

Monday, May 9, 2011

where are my unicorns?

In some kind of normal, sane world, I'd be able to write the following statement about Friday's doctor appointment:

"My doctor's appointment went well! Doctor #3 knew exactly what was wrong, and we have a wonderful plan to fix it."

I have no idea where that world exists, but I imagine it filled with rainbows, unicorns, and many adorable babies - of which I could have my pick.

Instead, in Katie's world, this line from RE#3 sums up my two-hour visit:

"I wish I didn't have my clinicals this morning, because now I'm going to be thinking about this all weekend."

Yes, that's right. My name is Katie, and I'm a medical freak. A mystery. Something to be marveled. And it actually has nothing to do with cysts.

I ovulated. On a triple dose of birth control.

Let's back up. After the surgery in April, I stayed on my original birth control pill (Micronor) and my gynecologist added a double dose of Norethindrone (meaning 10 mg a day). That's three birth control pills per day. Essentially, my ovaries and uterus should look like the eye of a hurricane: calm, with no activity.

Instead, the lining of my uterus - which should be thin to the point of near-bleed - is over 1 cm thick. And my right ovary showed a collapsing follicle, one that looks as though it recently popped out an egg.

I wish I knew what to say, but I don't anymore. I wish I were hopeful, but I'm not anymore. I'm at this loss of what to think or feel about my body. How is it possible that it reacts exactly opposite of how it should on that much progesterone? How is it possible that I don't ovulate when I'm not on birth control and I DO ovulate when I'm on birth control?

This should not be rocket science.

They are OVARIES. And a uterus! Women have had them for as long as we've existed. And how is it that no one can figure out how and why mine are miscommunicating with the rest of my body?

Reeling it back in . . . here's the plan:

I went off the pills immediately. My last dose was Thursday night. We will let my period come naturally. Then, we'll go back in for another ultrasound and try a new medication.

Because I haven't had a period since February and because my lining is so incredibly thick, we can expect Aunt Flo to be a raging bitch. The doctor warned me it would be a "doozy" with nausea, clots, and dizziness. The cramps are already in full force, so I can't wait until the bleeding starts and I feel like ripping someone's face off.

Normalcy. That's all I want. I want to go back to normal. Only I forget what normal feels like. Instead THIS is what feels normal - doctors, more doctors, pain, bleeding, hospitals, cysts, medication, hot flashes. I'm tired.

And I want to know when I get to experience the unicorns and rainbows and babies.

Thursday, May 5, 2011

OBL and the new doctor

I started to write a post the other day about my reaction to OBL's death, but I couldn't quite find the right words. I deleted and rewrote numerous times, and I finally trashed it after I watched this video last night. Because Anderson Cooper says it a million times better than I ever could.


Over the past couple of weeks, I realize I've been both absent from commenting and vague in my posts. I think I needed a break.

Some of you follow me on Twitter and know that I bit the bullet and made an appointment with yet another doctor - this time at a teaching hospital in Tampa. I first called and made an appointment with a general gynecologist. But then a friend of mine who had IVF done at this same hospital's RE clinic emailed the top two REs and explained my situation. One wrote back almost immediately and, after exchanging several emails, his assistant called and booked me an appointment for tomorrow morning.

I made perfectly clear to him in my emails that we have no interest in getting pregnant. We simply want a solution (or at least a reason) for the chronic cysts. Overall, I'm hopeful, but at the same time, I'm trying not to get my hopes up. The last thing I want is to be let down by yet another doctor (RE#3). So, we head to Tampa tomorrow morning with guarded excitement. Wish me luck. The way my record is with medical professionals, I might need it.

Wednesday, May 4, 2011

advocacy day, part two

Below is my Advocacy Day letter. If you aren't attending or have not written your own letter, please feel free to add your thoughts for our lawmakers here.

Dear lawmaker,

I once began undressing at the doctor's office before the nurse left the room, and before both of us realized one little detail: there was no drape on the table. While I laughed at the time, the truth is that it's sad. It's sad that I go to the doctor often enough where I undress without even thinking. It's sad how a visit that should be a yearly occurrence has become an "at least once a month" affair. It's sad that I have to budget in my co pays, drug costs, and surgeries. It's sad that my most personal and intimate moments and experiences are forever ruined, and that I'm indifferent to situations (like the one with the drape) instead of embarrassed.

I'm tired of being sad. I'm also tired of fighting. Three years ago this month, doctors diagnosed me with infertility. I was only 23 years old at the time. Newly married, I faced never becoming a parent, living in chronic pain for the rest of my life, a high risk of developing cancer in my reproductive organs, and the likely chance that I would one day need a hysterectomy before I experienced menopause. The list of health ailments continues, and my medical bills keep piling up. To date, we've accumulated over $75,000 worth of medical expenses.

But despite what you may think, I'm not tired of fighting the disease. Don't get me wrong – I would love not to deal with this on a daily basis. I've had my fair share of, "I can't do this anymore" meltdowns in my car on the way home from another doctor or emergency room visit. Mostly though, I'm tired of fighting for the disease. I'm sick and tired of fighting, advocating, and championing for my broken body.

That's why I'm writing. I'm asking you to do it for me – to do it for all of us. We don't deserve to be told that infertility is not a disease, even though the World Health Organization recognizes it as such. We don't deserve to be told that the medical testing and treatment we need is elective in nature, and therefore will not be covered by our insurance policies. We don't deserve to bear the financial burden of something we did not choose, on top of dealing with the physical, mental, and emotional strains of this disease.

We deserve better. We are empathetic, passionate men and women who simply want the same dignity and respect given to others facing medical crises. We want our voices heard, and – to show you this – I've asked some of my friends who also could not make it today to share their thoughts with you, too. I encourage you to go to my Advocacy Day blog post (http://www.fromiftowhen.com/2011/05/advocacy-day.html) and read the words of my friends and fellow infertiles. "Listen" to what they have to say. Their stories are important.

My husband and I made the decision to pursue domestic adoption late last year. While I look forward to the day when I hold our baby in my arms, I equally look forward to the day when I won't be treated differently because my body is broken. I don't know when that day will come, but I do know that you have the power to make it arrive sooner. You have the power to turn our voices into action. You have the power to fight for us. I can only hope you decide to use it.


RESOLVE Volunteer

Tuesday, May 3, 2011

advocacy day, part 1

Thursday is Advocacy Day, and I am sad I can't be there. There's nothing that would make me happier than to march up the steps of Capitol Hill with thousands of other men and women and bitch about ovaries, uteruses, and testes for an entire day.

All joking aside, Advocacy Day is a big deal, and I've always wanted to attend. It's a day that allows us to send a message to those on the outside that says: "We are important, and we have a voice."

I've been working on a letter to send along with an awesome friend who is attending, and I'm having trouble writing it. (Yes, I'm actually having issues writing down my opinion. Who ever thought that might happen?) So, I thought I might get some inspiration from all of you, and - in a sense - create an open letter on this blog about what YOU want said on Advocacy Day. I will include the link to this post in my letter, because I think it's crucial that EVERYONE has a voice and that there is no finality to what we bring to Capitol Hill on Thursday. We need to provide lawmakers with a living, breathing, every-changing testimony of our experiences. I'll also post the letter here when I've completed it.

That said,

What is the one thing you would say to your lawmaker about infertility? What do we want them to know not only about the disease, but also about our personal journeys?