Monday, January 30, 2017

The Meaning of Words

You guys, I wanna talk about the power of words for a moment. 

Earlier today I was having a conversation with a woman who I had just met. We share multiple mutual acquaintances and we were talking about the race (see previous post). 

She said I was brave. 

I have to say I was stunned. And not just for a moment, but for awhile. All semblance of thought had left me. I had no words. And my eyes teared up. 

In all of this, in all of this crap and awfulness that we've gone through, that word had never entered my mind. I never thought of myself as brave. For the most part I think I'm just lucky to get through each day without having some sort of...well, something. There was a time where I was lucky to just get out of bed-and let me tell you, that took some pushing. There was a time when I didn't want to do anything except lay on the couch and stare; yeah, the TV was usually on, but nothing registered. There was a time when I would have given ANYTHING to not give myself one more stupid shot because I was so bruised up and no matter how much you ice your skin those big needles still hurt like a mother. There was a time when I was not myself. When I hated myself. When I did not think that I deserved any good or any niceness. There was a time. 

And there are still times like that. 

But being brave? No, there was never a time like that. 

Except. Except...

Do you know how much courage it takes to jab a needle into your stomach? I do. 
And then-to do that once, twice a day? I do. 
Do you know how much courage it takes to go to the store to get tampons because you couldn't even finish your two week wait before your period came? I do. 
Do you know how much courage it takes to talk to your friends, your friends who don't know, ask them about their children and watch these beautiful children, who you love, grow up? I do. 
Do you know how much courage it takes to not cry uncontrollably when a very well-meaning person asks tells you you'll make a wonderful mother some day and then asks when that will be? I do. 
Do you know how much courage it takes to hold your friend's newborn, three days before your first fertility appointment? I do. 

I know so many amazing and wonderful and BRAVE women who have all done this, and more. And yes, they're brave. These women-WE-have so many reasons to just shut the door on life and crawl into bed and stare. But we don't. We do the hard things. We do the painful things. We smile and keep on going. Because we're brave. 

And I did not realize that until I had a conversation with a woman I barely knew. 

Thank you. 

Tuesday, January 10, 2017

My New Family

This is a happy post. With good news!

Two days before Christmas, Trey and I received an email. It was in response to this amazing opportunity we had applied for back in November.

It was a difficult application. A lot of it was the usual demographic information. I had to get a letter from my fertility doctor, which was a little more difficult than I planned; there was some miscommunication in the office and then I don't think I explained what I needed from him very well.  And then, the hardest part: explain our story to a handful of strangers. Trey seemed to make it very easy; throughout this whole process he has been very light-hearted, very hopeful and optimistic; it's usually the reverse in our relationship.

But how to explain everything to these people who didn't know me? Who may not understand that I try and hide my pain so that I don't inconvenience anyone, including my husband? How do I explain that I often use sarcasm to mask the words that I really want to say?

The answer: Just put everything out on the line. Put your heartache, your pain, your feelings out in the open, for everyone.

And that's exactly what we did.

The opportunity is called The Race to Parenthood 5K, which is the main event of the non-profit The Road to Parenthood. This is a non-profit organization that helps couples going through infertility treatments fund their pathways to parenthood. 100% of the donations and race proceeds go to five Featured Couples.

And we were chosen. We were chosen as a 2017 Race to Parenthood Featured Couple.

And I cried, which shouldn't really be surprising at this point, but this time it was a happy cry. It was a relief cry, it was a hopeful cry. Because after all the failures, all of the disappointments, we had hope. We were given hope. And that was such a wonderful Christmas present.

Immediately, all of the past Featured Couples and race organizers welcomed us "to the race family." And that phrase really struck me.

We are a family. True, we're not related by blood; but we are related by experience. A life-changing experience. The people in this family already know us, because they've been where we've been, they've had the same ups and downs. And while several of them have their little miracles, that doesn't take away from the fact that they had to go down the same road we're on right now. And that makes us a family.

The Featured Couples are divided into teams based on colors (green, red, yellow, orange and purple). We were chosen for Team Green and we met our awesome mentors, who were 2016's Featured Couple. They have been so nice and so wonderful; they have opened their arms to us and we actually haven't officially met yet!

I am so excited about what's to come in the next several months as we plan our 2017 race. I am so excited to meet the other 2017 Featured Couples and know that we are going to be lifelong friends; that our kids will be friends for the rest of their lives because of what their parents went through.

I have been thinking about My Monster lately, though. There has been so much good stuff happening to us lately, that I almost feel back to my normal self. Of course, she is still there.  She will always be there, though hopefully she'll be dormant for a good long while. My Monster will never go away; she is forever a part of me. You can't erase her just like you can't erase our experiences, our troubles, our bumps and obstacles. Infertility is a life-changing experience; at the end of the road, whatever we decide our end to be, we will be different. Hopefully stronger different, but different. No matter how much I want to, I will never be the Lara of 2012 or 2013 or even 2014 when our journey began. And that's not necessarily a bad thing. Our journey is not a bad thing; we have met the most amazing people, we have become stronger as a couple, I've learned a whole lotta medical stuff and I know how to inject myself (which could come in handy, you never know), and in the end we'll be able to live and love the choices we've made.

As I said during art therapy: I only want to be proud of myself when all this is over. I want to look back, no matter the outcome, and know that I have no regrets, that I made decisions for me and not because of someone else, and that I did the best I could. And that's all anyone can ask of us, really.

SO. I hope you all will follow along on Facebook or here on the blog for all of our updates on the race and on our journey. Once the race planning gets into gear I'll post "newsletters" on our blog so that those who are interested have the information.

You'll see this a lot and I'm not even sorry:

Go Team Green!!!

Monday, January 2, 2017

Moving Forward-Reflections

It's Christmas again. I feel like it was just Christmas. My parents warned me about this phenomenon of time speeding up as you get older. Like most other things they told me that I didn't believe, they were right. It has been a rough year. For most of it, my life has been doctor's appointments, shots, blood work, more shots. And waiting. And then more shots. And losing our spontaneity and freedom to come and go as we please.

Our last hormone cycle failed. I didn't even make it to "test day." Which, in retrospect, not having to look at another negative pregnancy test was nice. Nice probably isn't the right word but you know what I mean.

A lot of things have changed over the past year. I am no longer the same person. My perspective has changed; the way I interact with the world has changed. Even my marriage has changed.

A year ago, I was still under the care of my OB/GYN and we were in the middle of doing Clomid cycles. I was so naive. I didn't think of myself as "infertile." That was a four-letter word to me. "I'll just take some pills and 9 months later we'll have a baby. It'll be easy!" Never did I think that I would give myself shots every day for weeks at a time. Never did I think that I would become so used to reading vaginal ultrasounds that I would get excited about seeing follicles before my doctor would even point them out.

Never did I think I would be someone who would actually look forward to giving myself shots because at least that meant I was DOING SOMETHING.

The two weeks waits were the worst. Sit around and wait. Or, my new most hated phrase "Wait and See." If you want to torture me don't even consider water-boarding, just make me sit at home for two weeks and whisper "Wait and see" in my ear every hour or so. That's torture.

I have turned into a bitter, glass half empty person. I no longer get excited when my doctor mentions success rates, high egg counts, good uterine lining. I am anxious all the time because I want to go ahead and move on to the next thing. I have become a walking, talking infertility-hormonal-pin-cushion-science-experiment.

And then the WORST thing. The thing that I think and I wonder "WHERE did that come from?!"

The thought of, "What if I stop wanting children?" "What if I HAVE stopped wanting children?" and then I mentally hit myself over the head with a 2 X 4 because that's not true. And I hate myself for even allowing that thought to enter my brain. Of course I want to be a mom. It's the only thing that keeps me going, this unreasonable, buried deep inside hope, that one day I will be a mother. And then I stop crying, pull myself out of my hole, and ask "What's the next step?"

So, what is our next step? For us, it's IVF. We decided not to try IUI; it doesn't increase our chances and we'd rather spend our time and money on a procedure that gives us at least a 50% chance of becoming pregnant. I am young, I am healthy, if a tad (or more) overweight, and chances are good.

We're taking a break over the holidays, because they're stressful enough, and will resume everything after the new year.

Maybe a break will be good. Maybe it will allow me to have a little optimism again. Maybe it will bring me back to myself.

Writer's note: This post was written several days before Christmas. In an attempt to lift my/our spirits we decided not to publish it until after the holidays. It's 2017 now and while we still face the emotions and challenges that come with being a couple struggling with fertility, we feel a renewed hope for this coming year. Good things (more on that later) to come!!! To everyone who has been so supportive, so loving and so caring: we appreciate you more than you'll ever know. Happy New Year!

Monday, November 28, 2016

An Update from the Newells

Well.  We finished our first cycle of hormone therapy. It didn't work, but I was okay with it. I kinda figured it wouldn't, in fact, I expected it wouldn't work. So while I was sad, I wasn't completely devastated.

I completed the Art Therapy study for women who have infertility. It was so amazing. Before being accepted into the study we had to take a "test." Essentially, you had to score within a specific range to qualify, if you scored too high then you were too sad, too low and you were too happy. At the end of the study I took the same test. I was stunned by the difference. The first time I took the assessment, I was one point away from being referred to outpatient therapy; when I took it at the end I was five points away from being too happy. When I got home I asked Trey if I was really that bad off, because in my head I wasn't, and he said he was actually worried about me and that I was really sad and upset.

We went down to Chapel Hill for UNC's homecoming and spent the weekend with my family. It was really nice to get away, and what was SUPER nice was that I didn't have to give myself a shot the whole weekend!!! Of course two days later I was sick, and I mean sick. I'm still having residual cough and congestion nearly a month later. Be glad you did not get this plague.

OH. Forgot one really important and scary thing.

About halfway through my injections I started bleeding, more than what is okay. My doctor was out of town so I had to annoy his partner who was covering his patients that week.  I ended up having to take a pregnancy test to confirm it it was early pregnancy loss.  I have never, ever hoped for a negative test. And thankfully, it was negative.

That's one of the scary things about going through fertility treatments. Even if you do become pregnant, you're so terrified of losing it that you can't even enjoy the early months of pregnancy. Anyway, I was fine, so we continued with the cycle.

A couple of weeks ago we had a very dear friend hold a fundraiser for us. I am so grateful for everything who has been supporting us and who participated in the fundraiser. We were absolutely blown away!!

So then that brings us up to the last week. Found out the hormone cycle failed. We decided to do one more cycle of just hormones. Hopefully, this time will work. It's somewhat encouraging, because I AM ovulating, which is the problem, but we just aren't getting pregnant. Trey and I talked it over and we made one very big decision. If this hormone cycle fails then we will move on to IVF. Right now with the hormones our chances of getting pregnant are the same as any "normal" woman, about 20% each month. We decided to skip IUI because it doesn't raise our chances that much and we'd rather put our time and money towards IVF. Our chances of becoming pregnant with IVF are 50%! So, that's what we will do, if we don't have any luck with one final hormone cycle.

Right now I'm trying to get into the holiday spirit. Trey's work adopted some Angel Tree children and we went to shop for clothes for them. It made me happy that we could help out, but so sad at the same time. It has to be one of the worst feelings, to have children and to love them, but to not be able to give them a Christmas, or to give them dance lessons or play soccer, or have a big birthday party. I can't imagine not being able to give my children those things. It makes me feel so bad for the parents who are good parents and who take care of their children, but are unable to provide for them. It's heartbreaking.

We're still plugging along. Keeping on keeping on. Waiting and seeing. We should get "Wait and See" cross-stitched and hang it in our house; it seems to be the Newell Mantra these days. I am doing better, managing my sadness and feelings of guilt. Lately I have had a lot of anger. A lot of anger at everything and nothing. An undercurrent of rage. I wish that I could stifle it, but if anything, I've learned that I deserve to feel how I feel and that I shouldn't feel bad for feeling sad or happy or mad.

Thursday, October 20, 2016

My Monster

Infertility is a very lonely diagnosis. Even though the statistics are now 1 in 6, you feel very alone. Especially during this time of year, when the holidays are starting, there's lots of family activities, traditions, and child-centered activities. It is very lonely to be surrounded by your friends and family who were so easily able to have children, who have no idea how this feels. You think absolutely awful things. You feel absolutely awful things. But mostly, you stay inside your head a lot, which is not the best place for a lonely, emotionally unstable person to be. 

As someone dealing with infertility I have quite the "social" life. This week I have been to the doctor (always a fun experience), gone to my monthly support group, and gone to my weekly art therapy. My support group is AWESOME. Imagine being surrounded by a group of women, all going through the same traumatic experience you are, and all know exactly how you feel, why you feel it, and we're all there to support each other. It's a very cathartic experience, hearing other women talk about their experience and getting advice and tips on the next steps in your own journey. I always feel so much better after going to meetings. 

There is a study in Richmond on the effects of art therapy on women suffering from infertility, specifically focusing on depression. Having never been in any sort of therapy, I was really nervous at my first session. I had a hard time opening up and I was worried that I wouldn't be able to artistically express my feelings to a stranger. I had no problems drawing my feelings; in fact, I was rather surprised to see what I had drawn (I will post pictures of my artwork at the end of the study). What was more amazing to me was that it worked. I felt better. I learned how to process some emotions and how to deal with triggers that may cause breakdowns. And that was only my first session. 

At my second session, I drew something that I was ashamed of. After my first session I made myself promise to be honest with my therapist and myself during our sessions. So, I drew what I was ashamed of. I call her "My Monster." 

I have often "joked" with Trey that he didn't know he was marrying a monster when he married me. I may not have had My Monster when we were first married, or maybe she was just lying dormant. But this experience has brought her into the foreground more times than I care to admit. 

My Monster is me. She is this thing that I have become since being diagnosed with infertility. She only cares about babies, timing ovulating, the two week wait, hormones, shots. She does not care about Halloween decorations or having a clean house. She does not care about her friends and what their lives are like. She does not care about being nice to the strangers at the grocery store or not running over the annoyingly slow people crossing the street. She is the cause of my awful thoughts. She is the deep sadness that I always have, even on good days. She is the cause of my exploding anger at nothing and no one in particular. She is the reason I want to be numb sometimes. I feel her presence all the time, off my right shoulder. She is always there. She comes to work with me, she goes home with me, she goes on trips with me. She is the niggling feeling I have when I am happy. She is the reason true happiness doesn't last very long these days. She is my guilt, my punisher, the worst things of me. She is My Monster and she lives in me. 

My therapist asked me about making the decision to stop treatment and what it would mean for me to make that decision. I told her that would break my heart to have to make that decision. I would not make that decision lightly and it would probably the hardest decision I would ever have to make. I don't want to give up. I have gone through so many failures already that I cannot make the decision to just stop, not right now, not when there is still hope. When I finish my journey I want to be proud of the decisions that I made. I want to be proud of the woman that I am. I don't want to look back on myself, at the most critical parts of this journey and think that I could have done more, that I should have fought harder. I don't want to be ashamed of myself. 

And so we come back to My Monster. She sucks. I hate her. I wish I never met her and that I don't have to live with her. But, she is me and I am her and so I will try my hardest to not let her screw with who I am. 

Sunday, October 9, 2016

Welcome to the Club-Part 1

People belong to lots of clubs: the single mother club, the widower club, the breast cancer club. Sometimes they're fun clubs like the millionaire club or the own lots of houses club. But I belong to the infertility club.

I joined this club, reluctantly and in tears, officially in September 2014. Fair warning, this is my story and I'm not holding back.

Don't say I didn't warn you.

I spent most of the summer of 2014 in pain and unable to sleep due to heavy periods. I cannot even describe to you how awful and disgusting this was. Well, I could, but that would mean reliving it and I'm not inclined to do so right now. The only point that needs to be made is that something was wrong. And something had been wrong. For nearly five months I was bleeding, having awful cramps and didn't sleep more than a couple of hours per night because of it. I knew something was wrong but I didn't want to be told that I was right.

Eventually it became too much. I was exhausted. I felt sick all the time. I could barely last a whole day at work. And I was terrified and had been for a long time.

I had a myriad of tests done, lots of blood work, my first experience with an internal ultrasound (side note: at the time I had no idea that these existed. It was not comfortable. However, I've now had so many of these that I can read and interpret them on the monitor). I was given a diagnosis of PCOS, which was helpful and not helpful.

PCOS has an unknown cause. There is no cure. You can treat it by causing ovulation, but this is sort of a catch-22 because PCOS makes it super-duper hard to ovulate (hence the problems we're having now). I was put on birth control and was told to call at a specified time for follow up.

The birth control did not help. It didn't make anything worse, but it sure didn't make anything better. Then came something terrible. Something that didn't even cross my mind. And the whole experience was so painful and traumatizing thinking about it these years later makes me tear up.

I had a biopsy-of my uterus. I had a uterine biopsy. Sounds not so scary, right? All they do is snip a part of your muscle and that's it. But the first scary thing was that I had to have this because my doctor was concerned I had cancer. Waiting those 24 hours to get the pathology results back was absolute pure hell.

The other awful thing was the biopsy itself. It's not the easiest thing to get into, a uterus. There's this thing called a cervix that, unless you're in active labor, is a fairly small opening. It's too small, in fact, for all of the tools (needles, etc) that have to get into your uterus. The way that they make room for all these things is by dilating it. Now, when a cervix is dilated for birth it dilates slowly. It does not happen all at once. When it has to be forced open, when a forced dilation happens and it goes from 0-60mph in two seconds it....it's an experience. So far in my journey it has been the worst medical test/physical feeling I have ever had. Your vagus nerve has to be stimulated to force your cervix open and then all these tools get shoved in and then they cut a piece of you out. So, to sum up, not fun at all.  I felt nausea, I felt hot, I cramped, I am pretty sure I lost consciousness for a few seconds. I had to lay on the awful table for several minutes until I could even sit up.

After I could stand up I went to put my clothes on and got some water from my nurse. I left the office and I went to sit in my car and I cried. I cried because I was exhausted, I was terrified, I was hurt and slightly traumatized, and I was nervous. My legs were still shaking and I didn't feel comfortable enough to drive so I did the worst thing-I googled symptoms of uterine cancer on my phone.

I got a phone call the next day. I did not have cancer. "Just the PCOS!" the nurse said cheerfully. Yup, just the PCOS. I had a diagnosis. I had a reason that this had happened. I have an incurable disease.

And I had just been accepted into The Infertility Club. I just didn't know it then.

Tuesday, September 27, 2016

Anger...it's a Four Letter Word

I sit down on my bed. Tears form in my eyes and I shake my head as if to clear the last three minutes from my memory. Like that will reverse time and I can still be the same person from three minutes ago. But it doesn't.  I am still holding the negative pregnancy test. The box of tampons I had to pull from the closet are sitting at the edge of the bed where I put them. I can't go back in time.

They come now, the tears. I can't stop them. I can't hold them back any longer. My body has failed me. Again.

Trey is downstairs.  I can't tell him yet. I need just a few minutes to grieve by myself. I need a few minutes to lose my strength, to be a mess before I can tell him.  I can give him those few minutes that I couldn't give myself. I can let him hope just a few minutes longer.

Two weeks later and it's fall.  My favorite season. Or it was. I'm not sure that I have favorites now. I have work and I have shots and I have medicine and I have tests and I have more tests and I have tears. None of those are my favorites.

I snapped at Trey today. There was no reason. No reason at all.  I felt bad afterward and I apologized and cried (there is a lot of crying on my part in this house nowadays). I told him I was sorry because when he married him he didn't know he was signing up for this. He didn't know his wife would turn into this monster...and that it will only get worse. I am not the same woman he married. And I apologized for that.

There haven't been a lot of good days lately. A lot of heartache and heart break. A lot of anger, mostly towards myself though I occasionally do yell some choice words to unsuspecting drivers.

I feel anger towards the people I see who have babies. Or small children. Or really any size children. I want to ask them how hard they had to work to have those babies and if they deserve them. But that's not fair. To them or to me.

I am angry at family members who didn't react how I hoped they would, or who didn't react at all.  I am angry at (ex) friends who don't think before they speak and say hurtful things, whether on purpose or not. But mostly, I am angry at myself. And that's not fair, either.

This is not an easy journey. It's not even a hard journey. It's an impossible journey. It's a journey that you can't imagine yourself taking until you are already in it-whether you want to or not. All of us on this path have no idea what the end will be like. We climb painful and difficult hurdles only to wonder "Is it going to get worse?" "Can I survive worse?" We take devastating blows and yet still get up to face the next impossible task. We are beaten up. We are tired. We lose hope. We lose reason. We lose a lot. It's an overwhelmingly emotional journey.

But we're not done. Not yet. We still have a lot of options, which means there's a lot of room for more heart break and more sadness, but there's also a lot of room for happiness...and maybe still a little bit of hope.

Next steps for us:
Hysterosalpingogram (HSG) and a last round of taking the Letrozole/Ovidrel

If you're reading this and you're on the same journey, but not yet ready to talk about it, I would highly recommend checking out RESOLVE: the National Infertility Association (www. resolve.org) and liking their Facebook page. There is a lot of information on their website and many locations have peer support groups.

If you're a family member/friend of someone suffering through infertility I recommend these two articles:
Family and Friends PDF
Infertility Etiquette