It’s All My Fault

It’s all my fault
I could have prevented this from happening
This is something I can control
I am to blame

I know many of you reading this right now are wondering what I’m saying. My IF sisters are probably yelling “It’s not your fault!” at their computer screens right now, but I’m guessing have also felt this way at one point or another. Since you know my story, you’re probably wondering if I could actually be referring to our miscarriages. You might be thinking, does she actually think this is her fault?? Well, guess what?

I am.

But here’s the thing. I only think those devastating thoughts sometimes. Deep down I know it’s not my fault and I honestly believe it’s not. I would tell anyone experiencing infertility or a miscarriage that it’s not their fault. And do you know what? I would say it with 100% certainty. It is not your fault.  I know this is beyond my control. I know I’m not to blame.

I do feel this way sometimes though. Do you know when I feel this way? When I’m asked if I’ve tried relaxing. When I’m asked if my doctor has prescribed a vacation (no seriously, this happened to me last week). When I’m asked if I cut stress in my life.

When someone says, “Have you tried relaxing?” I actually hear, “You wouldn’t have lost your babies if you would have relaxed. This is your fault. You had control over the outcome and you didn’t relax.”

While that may not be anyone’s intention and as Tony said, maybe they just mean that I need to be patient, and I reminded him that I’ve always been understanding when it comes to what others say. I don’t ever think people intend to be hurtful (which I know shouldn’t give them an excuse to say hurtful things, but I just don’t believe that’s their intention). I always try to believe the best in people.

I know that this is hard to talk about and it’s rarely ever discussed.  I understand, nor do I want everyone walking on egg shells around me either.  In fact, when I get text messages with suggestions, I’m glad they’re trying to help and thought of me. When I get asked questions I don’t necessarily want to answer, I’m glad they want to understand and are thankful they are trying. And even when someone tells me about a friend who went through IF and now has a little one, I look at it as a sign of hope.

But I find  ‘just relax’ is different. I just don’t think it’s helpful. Is it really even a kind thing to say? To completely dismiss doctors and medical conditions.

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There is no amount of relaxing that would have kept my babies alive and by saying that, it’s insinuating that my stress caused my miscarriages. Two simple words, ‘just relax’ places blame. If I hadn’t stressed, I would have my babies. I can’t tell you how much that stings.  A medical diagnosis, chromosomal abnormalities, and why it actually happened are irrelevant. If only I had relaxed.

I often wonder if people can even relate? When you feel like the death of your baby is caused by something you’ve done or haven’t done. And let me tell you, that is guilt that weighs so heavily on you.  It’s an immense weight to carry; that blame. The feeling that it’s your fault and somehow was within your control to change… but you just didn’t do enough.

I guess what I’m trying to say, is that by just saying ‘just relax’ to someone struggling with infertility is hurtful. It’s like saying my Reproductive Endocrinologist (RE) knows nothing and this is just my fault. That’s an awfully big burden to place on someone’s shoulders, isn’t it?

 

 

Except for Today..

If you don’t want to read my “Except for Today” story about the kindness of a stranger at my RE’s office, skip to the very bottom, there you’ll find my baseline US/ blood work results.

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At the RE’s Office: 

It’s kind of strange in the RE’s office. It’s unlike any other appointment I’ve ever been to-those that have been through this- I’m sure you can understand. My RE’s office does a really great thing- they separate the regular OB patients with the IF patients. Which means, we don’t have to face fertility while we are dealing with our own infertility. It also means everyone in that little waiting room is dealing with infertility.

To be honest, I was angry when I walked down that long hallway this morning. Yes, I greatly respect my RE’s office, but I was mad walking through that door. Why do I have to be here?  Why do I have to go through these appointments? These emotions? These tests? Why do I have to do this to have a baby? Why is this so damn difficult?

I should have MY babies, but I don’t. And there is nothing I can do to change that. After checking in, my anger subsided a bit, when the lovely secretaries knew me by name and made me feel welcomed. They’re always so kind and take pride in their work.

After checking in, I walked back a narrow hallway with my ultrasound and blood work orders in hand, sat on these little benches that stretch down the hallway. Every time I go back that hall, I’m reminded of how different infertility looks. All of these women sitting there on the benches, all look so different. Yet, I know no matter what path they have taken to be here, we would have a connection if we talked.

But that’s the strange part. No one talks.

No one even looks at each other. We all stare at our phones checking our latest FB feed full of small children and pregnancy announcements. We don’t make eye contact, in fact, we rarely look up. We notice each other, but words aren’t spoken. I often wonder about their story, but I won’t dare ask.

We are all going through this challenge. We are all experiencing infertility and the heartbreak that goes along with that. Yet no one says a thing…

Except for today…

I refused to get on my phone in the waiting room (it’s hard enough just being there) and something on the ‘infertility bookshelf’ caught my eye. “He Hurts During a Miscarriage Too.” I picked up the very thin book wondering if Tony could have written a better, more helpful version. The answer is yes. He really would have done a better job, but he’s not the writing type. I don’t know why I decided to flip through that book anyway, but I did. The girl next to me briefly put her hand on my knee and simply whispered, “I’m sorry.”

It’s strange when someone talks in the infertility waiting room. It’s such a narrow hallway and we are sitting so close together. When someone speaks, everyone hears…even if they whisper.

The one girl sitting across from us in her beautiful corporate attire wearing 4-5 inch black heels, simply stopped scrolling on her iPhone6 and glanced up.

I said to the girl beside me, with a growing knot in my throat, “Thank you. We’ve lost 4.” I could tell, that girl in the corporate power suit across from us, was about ready to cry. But I couldn’t speak past the knot in my throat. Maybe she had just lost her baby? Maybe that’s why she was there? My heart broke for her because I knew the answer to those questions. I just knew. 

The girl who originally said she was sorry, gave me a half smile that said, “I understand” and looked like she was about to say something else. Maybe she was going to share her own story, but my name was called for my US. The conversation seemed to happen so quickly, but I’m grateful for her kindness and I’ll forever wonder what their stories were. I hope they know they are not alone.

My Results: 

My US was perfect. My ovaries are clear, absolutely no cysts. I met with the nurse, who I adore and she told me that this cycle would still depend on my blood work. Later that afternoon, I got a call from the nurse.

All of my blood work is normal, US is clear, and I’m instructed to start Follistim on Saturday. Happy July 4th to Tony and I! :)

 

Paying Attention to the Small Moments

I always say that infertility has changed me. Yes, I’ve changed. Sometimes I’m not proud of the changes, while most times I am.

I see life differently.
I’ve cut people out of my life that honestly never deserved to be there in the first place.
I love differently.
I speak up for myself and I’m my own advocate.
My faith is stronger.
I take time to talk to strangers. I’ve realized everyone has a story.
I give more.

I take everything in. I pay attention to the small moments, the ones that aren’t so small at all.

And today was no different. Tony and I had a wonderful day at a Mud Sale. They have these in our area. It’s an Amish run sale that benefits the local fire company. There are a few auctions happening at the same time and it’s a pretty big event- most of them happen in the spring when it rains the most. 

While most people wouldn’t want to walk around in torrential downpours, with flood warnings in effect, Tony and I looked at it as an opportunity to get some good deals and spend time together. It is called a Mud Sale after all. Why not get a little muddy?

These two boys helped us load our flowers:

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We had a good day at the Mud Sale and did find lots of great deals, but the deals aren’t what I’ll remember. Honestly, they’re not that important at all.

At one point in the afternoon, we were loading a GoKart into the truck in the pouring rain, we were both completely soaked because we couldn’t hold the umbrella and load the GoKart, and Tony leaned over and kissed me.

I questioned what that was for and he assured me that not many girls would allow their husband to buy a GoKart, or even help them load it in a downpour. He followed the kiss by telling me how much he loved me. After all this time, he is still that man. The one I met nearly 18 years ago on the school bus that tried to sit next to me every day. The one that loves me and shows it.

Those are the moments I’m so grateful for. Would I have even thought twice about that moment if it wasn’t for this journey we’ve been going through together? Maybe. But I know I’ll hold on to this moment a little tighter now. I’m not sure I would have done that before. Something so simple as a kiss in the pouring rain and three little words. I love you. I guess I’m just a different version on myself now.

 

 

 

 

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At the Mud Sale it also hit me that we’ve officially hit our 3 year mark trying to conceive. Three years. As I reflected on this today, I didn’t cry. I didn’t even get upset. I just thought, this is the way things are. It was kind of a strange feeling to feel acceptance in the place I’m currently at.

When I mentioned this to Tony (I never expect him to remember although he does extremely well remembering dates) he told me he knew it was coming up and suggested a date night. We went to one of my favorite crab houses just over the Maryland line.

IMG_2687We got Crab Bisque, Maryland Crabs, and sat and talked for about two hours. That’s the thing about picking crabs, it takes forever. But that gave us a lot of time to talk and reflect on a few things over the last three years. 

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On the 45 minute drive home from the crab house, I guess we had enough of talking about our journey, because we ended up singing all of the country songs on the radio as loud as we could together. It’s pretty funny when neither of us really know all the words. But I have to be thankful his singing skills (or lack of singing skills) match mine.  :)

Although I feel incredibly unlucky most days dealing with recurrent pregnancy loss, at the same time, I feel very lucky to have Tony in my life.  These are the moments that make being in the trenches a little easier to handle.

 

 

An RE Appointment

It’s kind of strange now; letting people into this part of my life. However, I put a lot of thought into this before I took away the anonymous factor,  shared my blog on Facebook, and started a Facebook page. Besides, I know I can always password protect my posts if I need to do so.

My thoughts are that this is all part of my recurrent pregnancy loss battle. It’s the treatments, the fear of trying again, the appointments, and all of the emotions that go into this journey. And I’ve already shared, that this journey is ours. I’m going to own it.

So here it is, my first post publicly about my RE (Reproductive Endocrinologist) appointment, personal stuff that has ordinarily been hidden, and another post I’m  taking a risk writing.

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After a LONG break to get myself back physically and emotionally, Tony and I were ready to try again last cycle. I thought everything would be perfect because I had lost 50lbs, cut a lot of stress, and had been taking care of myself. Only it wasn’t. Being diagnosed with PCOS, diet and exercise are supposed to help and in many ways I can tell it has. But for some reason my levels went crazy.

Last cycle my DHEA spiked, along with my prolactin- both of which are dangerous when it comes to RPL. Dr. M was very adamant about getting them under control before trying again. And during our first monitoring appointment, I had a cyst on my ovary and so it was a double hit- the elevated levels and the cyst.

It’s strange though, I took it well. I lost even more weight and I found myself in a much better place. I’m okay with the extended break and I’m not even going to call it a setback.

So, I was put on another medication, Bromocriptine and started taking vitamin E as a natural cure for DHEA levels.

Four weeks later, I had more blood tests and I met with Dr. M today. And guess what? My levels are normal!!

  • Thyroid Panel: All Normal (He actually said that Free T3, Free T4, and TSH were perfect!)
  • Prolactin (normal ranges 3-27) : mine was 4.1 (down from 18)
  • DHEA (Normal ranges 96-512): mine was 312 (down from 463– this was the number he was most unhappy about). He likes the levels to be under 300.
  • Testosterone (normal ranges 14-53)- Mine was 26 (it was 27 last time but he was happy with this number)

So overall this is very good news! Finally, after losing 51.6 lbs and adding a critical medication, my levels are normal. So the plan is to call on CD1, which will be at the end of June. One step at a time.. one step at a time.. and I’m praying for no cysts! :)

 

Beating Infertility?

Some think beating infertility is a positive pregnancy test, while others think it’s making it to the first ultrasound, and for some it’s when they hold that precious little newborn in their arms for the very first time.

But when do you actually beat infertility?

If it’s when you get that positive test, does that mean those that have lost their babies have failed? Or those that never see that second line are forever a failure?  If it’s when you get to hold your baby and they finally make it home safe, does that mean everyone who has chosen to live a life without children will never win? Does it mean they have permanently lost the battle? I really don’t think so. 

I realize we all define beating infertility a little differently, but I guess, what I’m trying to say here is that if we define beating infertility as having a baby, we also define others as failures.

I’ve read so many posts of women who have their healthy baby in their arms and do you know what? For them, the pregnancy announcements still sting, the ultrasound pictures still break their heart, and jealously still strikes when other moms take being a mom for granted. Even after giving birth, they are still beating infertility with every unpredictable emotion.

I know infertility is something that will always continue to have an immense impact on our lives, baby or not. But it’s not really fair to define ourselves as failures even if we do not have a baby in our arms.

If we go by a positive pregnancy test, than I’ve beat infertility 4 times. If we go by the definition that I need to have a baby in my arms, I lost. I’m a failure. The reality is that many will never have a baby naturally or even a baby in their arms. According to some definitions of beating infertility, they will never win.

To me, that’s not really fair to say.

What if we change our way of thinking? What if we define beating infertility as something other than a baby in our arms? 

For me, I beat infertility everyday. Yes, even without my babies. Even in this storm we call infertility. I win.

I beat infertility by choosing to get out of bed in the morning. Yes, I win just for getting out of bed some days. I win by putting myself first and cutting toxic people out of my life. And I won when I quit my job to put me first. I even won when I learned how to protect my heart.

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I beat infertility when the doctor said, “I’m sorry, there is no longer a heartbeat” and I pulled myself back together and slowly gained a love for life back. Yes, I can look back at those dark days and realize I beat infertility.

When you’re broken over and over again and you stand back up, you win. When you find the courage to try just one more time, you win. And yes, when you find the strength to realize you’ve had enough and walk away from TTC, you’ve beat infertility. Baby or no baby, you’ve won.

So my question for you is, what if we define beating infertility a little differently? What if we give all the warriors who are surviving everyday a little more credit? What if they are beating infertility every single day?

Just something to think about I guess.

 

Infertility Costs?

Finances are something that is not always talked about when you’re experiencing infertility, however it is one of the biggest burdens for some. In most states (and countries), with most companies, anything labeled as “infertility” is not covered.

I was very fortunate that my diagnosis was covered, which involved thousands of dollars worth of testing and about 40+ vials of blood. My head was spinning when I got the initial insurance papers and there were many, many tears wondering if insurance would even pay. I’ve learned a lot about dealing with insurance companies since my initial diagnosis almost 2 years ago now.

Even being diagnosed with PCOS, my RE has to be careful things are coded correctly otherwise my basic, much-needed care will be denied by insurance. I even have them listed in my phone under ‘favorites’–that’s how much I call.

I’m not about to have a discussion about our finances here on the blog, but I do feel like it’s important to talk about. I’ve seen the financial end be the only reason someone cannot have a family. Compared to most going through infertility, our medicated cycles are cheap. I’m not complaining at all, but I do want to bring attention to this.

I wanted to share a few options with you guys, in case you haven’t looked into them, or didn’t know they existed.

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I came across this article on Resolve.org, “Making Treatment Affordable” and I wish I would have discovered it sooner, but it’s really what has prompted this post. Check out their link. It may be very helpful.

The breakdown per medicated cycle (not even with IUI):

  • Follistim: $268 per cartridge-need 2 (discounted through Walgreens because insurance doesn’t cover it).
  • Noveral: About $94 per injection-need 2 (again, not covered)
  • Progesterone Suppositories: $180 (insurance just changed and these are no longer covered either)
  • PCOS Medication (is covered by insurance, but I still pay $45 a month- Glumetza, Synthroid, Bromocryptine)
  • Ultrasounds and blood work are covered at this point as long as I’m not doing IUI or IVF.

Grand Total for one cycle trying: $949

I specifically want to talk about “First Steps” which I applied for because I was having sticker shock looking at those numbers. It sure adds up quick and we’re not even talking IVF or even IUI here.

  • The company is called DesignRx and they will cover anywhere from 5%-75% of your medication depending on your income. I’ve read on numerous forums that everyone will at the very least receive 5%. Why not at least try?
  • They only cover 3 medications- Follistim, Pregnyl, and Ganirelix
  • Many pharmacies accept this discount program (which is how I found out about it). I called every pharmacy the RE’s office suggested and spent an entire day on the phone.

So how bad was it to sign up?

  • Here’s the link: http://www.fertilitybydesign.com/PatientPortal/Designrx/FirstSteps.aspx
  • I downloaded their application on the right side of their website, it’s only two pages (very short).
  • I then went on the IRS website and they emailed me my tax form. I used the 1040 (if you didn’t do your taxes digitally you can scan a copy from your records).
  • I emailed DesignRx a scanned copy of my 2-page application, a copy of my 1040 stating our annual income, and a brief letter of why I was I applying.
  • I emailed them on Friday and I heard back on Monday.

I received a letter with a discount code that is good for one year from applying. I received 25% off Follistim. I also talked to my RE about switching from Noveral to Pregnyl and he gladly said he would change my prescription when I’m ready.

So, for each medicated cycle, just by applying for this program, here’s the breakdown:

Follistim:
Prior to discount: $536
After discount: $402

Pregnyl:
Prior to discount: $188
After discount: $141

Progesterone: $180
Other Meds: $45

Previous Total: $949
With DesignRx (First Steps Program): $768

And in case you don’t feel like doing the math, that’s a savings of $181 just by filling out a short application, getting a copy of my 1040, and sending an email.

Treatment is still expensive, but thankfully we live a pretty frugal life and we’ve been saving specifically for treatment during our break.

I’m hoping that this information can help someone dealing with the financial stress of dealing with infertility. If not you, maybe you can pass it along to someone who does need help.

Do you have any experience with funding for IF treatments? How do you afford medications? Any advice for anyone else reading this struggling to pay for medications?

 

 

 

A Church Meeting

Tonight I stepped outside of my comfort zone, which seems to be something I’ve been doing a lot in the past month. I always sort of loved the quote below and I guess that’s how I’m living my life lately.  Last night was no different, I stepped out of my comfort zone and took a risk.

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I feel very fortunate to have a community of women and men in the blogging/Twitter world that know and truly understand my struggle. I’ve always felt supported and had somewhere to turn.

Over the last year, when Tony and I decided to put trying to conceive on hold, I have done A LOT of healing. It has truly opened my eyes that there is little support for those that have experienced a miscarriage, a stillbirth, or are going through infertility. There are so many people hurting in silence because support is not easy to find. I’m finally strong enough to put my story out there and help, yet in the church, there is no where for me to do so.

It makes me upset that it’s not more widely talked about and everyone who is going through this is suffering in silence (although I completely understand why- I kept my secret for 2 1/2 years). Yes, I found this online community, but that was entirely by accident. I had no idea that it even existed. I only started writing as a way to cope and it has turned into so much more. But how do men and women cope without a community of support? How do they survive without a solid support system rallying around them during a difficult time? How do they cope feeling like they are alone in the world? Honestly, I remember a time like that and it was a very difficult place to be.

So back in December/January I emailed my church to see how I could get involved. I was willing to run a support group, bring meals or care packages to families that have experienced a loss, or even just be an available contact for anyone who wants to talk.

I didn’t receive an email for a few weeks, and when I did,  I was redirected to another organization and told they only are notified of one miscarriage a year. He did give me the first name of a woman who was starting a ministry to support families going through a miscarriage, but it was only in the beginning stages. He did not give me a number, last name, or any other information. It was just mentioned that he could give me her info if I’d be interested.

One miscarriage a year? The statistics prove that 1 in 4 pregnancies end in a miscarriage. When you’re going through a tough time, specifically for me- RPL, that’s a time when your faith is tested. I remember how hard it was after my 3rd miscarriage to even attend church. We saw that heartbeat twice and He didn’t save my baby. Do you know how hard that is to cope with? That God could have worked a miracle and for whatever reason chose not to? That is when I needed the church, but nothing was available for me. I thought so often about just walking away.

Here’s a church that serves thousands of people a weekend, across numerous branches, and has no support for women like me? How is that even possible? Shouldn’t the church be one of the first places I can turn? When my faith is tested and I’m breaking, shouldn’t the church help guide me? Shouldn’t help be easy to find?

As it turns out there was a glimmer of hope in that email. That other woman (Jackie).  I didn’t know her story, but I did know she was starting a ministry. She saw the need too and she did something about it.  So I emailed  him back a few times requesting her info, only to receive nothing in return. I didn’t even know where to start. I just wanted to help other women, why was that so hard to do? Ironically, my therapist knows Jackie, so she was able to give me her email. Immediately Jackie responded and we had our first meeting last night.

So after church we met to discuss the ministry she’s starting. I was incredibly nervous, as it occurred to me that this is the first time I’ve actually shared my story with the intention of giving back. I really wanted her to have a place for me.

As soon as we started talking I was no longer anxious. I immediately relaxed.  Here’s an amazing woman, who is doing amazing things.

She shared her story.. she has a beautiful little girl and had three miscarriages in a row, and now she’s about 31 weeks pregnant with a baby girl. Everyone has a story and looking at her, pregnant, you wouldn’t realize her story includes recurrent pregnancy loss. Three lost little ones.

After Jackie’s 3rd miscarriage, she had decided to start a ministry, which is still in the beginning stages, but her vision is to help those struggling through miscarriage, stillbirth, and infertility.  She decided to take her grief and make a difference with it. To me that is absolutely inspirational. After my 3rd, I wanted to walk away from God and almost did. I was so defeated.

We talked for about two hours about her story, my story, the ministry, her visions, why she decided to start it, and the road blocks she’s encountered so far.

It occurred to me that I’ve never had an face-to-face conversation with someone who has also experienced recurrent pregnancy loss. It felt good. Someone else who understood my daily challenges, my insecurities, and my struggle. I guess that’s the point of her ministry though. Other women (and men) should have someone they can talk to and they shouldn’t have to suffer in silence.

I have to say, when it’s up and running, it’s going to be great. I’m so thankful she was willing to take her suffering and do something great.

We are meeting again at the end of June to talk about the ministry specifics, but the most important thing walking away from that meeting? I feel God working through my story. There is a place for me and because of this journey I have a new friendship.

I’m not quite sure what volunteering is going to look like yet because it’s just getting started, but there is an opportunity and I’m pretty excited about that.