My First Advocacy Day

Every year Resolve – the national infertility association, organises an advocacy day at Capitol Hill.  What does that really mean?  It means that we get the chance to tell our senators and representatives what we really need to help build our families- IN PERSON!!! We get to advocate on behalf of the 1 in 8 couples diagnosed with the disease that is infertility and for our future generations on issues that help Americans to build their families.

I’ve always wanted to go to advocacy day, but have failed miserably because of work travels, this year I was able to get away from work for a few days to make it to Washington DC.  Unfortunately Chris couldn’t make it with me so I went alone and met up with some of my local infertility support group members there.  But I wasn’t really alone, I met some incredibly inspirational people who have been advocating and volunteering for YEARS!!!  And an added bonus I also met up with Heather from Meet the Hopefuls blog!!!!! Heather was the state Captain for California ☺️

So what did I do??

Firstly I attended a welcome reception on Tuesday evening prior to the big day.  Here we got a chance to meet our state captain and others from our state, figure out who had done this before, and who were our mentors.  Virginia was 40 something people strong! We were amongst over 200 people who had traveled from across the country to advocate.  WOW!

It’s quite nerve wracking – I mean, I am British, I only really know a little about how the US legislation system works (mostly from TV dramas ;-p), so there was a lot for me to learn in addition to what the legislation being advocated for was and it’s history.  Having experienced people and mentors available helped take away those nerves.  Us first timers weren’t alone.  We also had some online training a few weeks before to introduce the bills we would be asking representatives to co-sponsor and vote for.

Part of the welcome reception included a few speeches, one of which brought me to tears.  A veteran who had been injured in Afghanistan had been advocating with his wife for years to make infertility covered by the VA. Their infertility was directly caused by the injuries he suffered and his country wouldn’t help him build his family.  What an insult to his service and the life he gave to his country.  But in 2016 congress authorised funding to provide adoption assistance and IVF to those veterans who had a service connected injury or illness that caused infertility.  As a result of the funding this veteran has been able to have a child.  And they brought their 15mth old with them.  It was so moving to hear what a difference advocating can make.

Yeh, I cried, both tears of happiness and sadness.  Sad because the funding for the veterans was going to expire in 2019 so we needed our congress to support a new bill that would make infertility coverage permanent and overturn the ban of IVF in the VA.  My head actually hurts thinking that their country was not supporting their injured veterans.  I just can’t understand why anybody would be against it.  The only reason is money.  That is it.  So far just over 200 veterans have sought care under the funding that expires in 2019.  But as we all know, the process of infertility treatment and adoption can take years.  So some of those 200 veterans might not be able to continue their treatment if nothing is changed.  And then there are those veterns who don’t know they want to build a family yet, and in 5 or 10 years when they come to have children realise they need help, when it’s not there. It just makes no sense Congress!!! Support your veterans in building their families – it’s a no brainer!

I went back to my hotel excited for what the next day would bring.  I set my alarm for 5.30 AM so I could make it into the city to start our training at 7.30AM.  I actually found it hard to sleep thinking about it all.

The next morning, I made my way into the city on the metro as I decided to stay on the outskirts of the city to save a bit of $$$.  DC hotels aren’t cheap.  I had missed out on the block booking that Resolve had organised.  I spent a lot of my journey on the metro researching the Senators and my house representative.  What were their thoughts on family, veterans, adoption, healthcare and finance issues.  Did they sponsor or co-sponsor any of the bills we were advocating for already?  Did they have family, do they have any links with the infertility community already?  None of the senators, Mark Warner and Tim Kaine, or my representative, Donald McEachin, had co-sponsored yet, so I knew we had some work to do.

When I checked in I was given my schedule for my appointments and received all the supporting materials I needed, including a cheat sheet with information and facts that I would unlikely be able to remember off by heart!  My schedule was actually really good.  I had appointments at 11AM, 1230PM and 2.30PM.  I thought that was plenty of time between appointments, but in reality it was go, go, go all day.  After I checked in and got a hearty breakfast, we sat down in our states and was given more information about the day.  We were told a little bit more about the legislative agenda Resolve was advocating for…

S700 and HR1681 – Women Veterans and Families Health Services Act.  basically giving veterans permanent access to infertility treatment and support through adoption for injured veterans.

S937 and HR2476 – The adoption tax credit refundability Act.  The adoption tax credit is good, but doesn’t support low to middle income families, this legislation will make the tax credit refundable which will help these families who are more likely to foster to adopt, helping to take children out of foster care saving money in the long run.  It’s fiscally responsible, helps children out of the foster care system and helps building families.

Resolution 864 – PCOS awareness month.  This will designate September 2018 as PCOS awareness month.  It has already been passed in Senate.

Medical Research Funding for FY 2019 Appropriations.  Requesting funding of $1.531 billion for FY19 for research related to reproductive disorders such as infertility, PCOS and Endometriosis.

Finally….the most exciting and hot of the press news was announced.  A bill was being dropped on Advocacy day that will have a huge impact, the Access to Infertility Treatment and Care Act.

Wait, what???? YES! what an amazing piece of legislation.  We need to fight for this.  We fight this everyday in our own lives dealing with infertility.  This shouldn’t be a fight we have to have, but we do.  I know the benefits of great infertility coverage, I have 6 IVF cycles in a lifetime covered in my plan.  Infertility is stressful enough without dealing with financial crap.  This bill will require that health plans offer treatment for federal employees (including TriCare) diagnosed with infertility as well as cover fertility preservation for who undergo a medically necessary procedure that may cause infertility, such as chemotherapy.  The bill is being sponsored by Congresswoman Rosa DeLauro (CT-03) and Senator Cory Booker (NJ), they made videos telling us about the Bill and thanking us for advocating.  It was so moving.  I cried. Again.  (yes, there were lots of tears from me, I planned for it and didn’t wear mascara…more to come….!!!)

After being given all the knowledge we needed, we broke out into our states to figure out who was going to say what, to who and when.  With 40 virginians we were given 2 appointments focusing on different issues with each senator, so that meant there were about 20 people meeting with the Senator’s aides (or staffers).  I quickly discovered that I was the only one in my meeting with my representative Donald McEachin.  This meant I would be doing most of the talking and asking!  I had a mentor assigned with me – Chris, who was a guest on my blog during NIAW with his wife Candace.  Chris was fantastic, he was the state Captain and really was font of all knowledge and experience so I felt less nervous about and was more excited.  In addition to figuring out who was going to say what, we also had letters from other states and areas that were not represented by someone in person, this meant we had to visit the offices of these representatives and ask for an impromptu meeting with someone to talk through the issues.  We figured out who was going to deliver what and where.  At the time I had no idea how much work this was actually going to be!!

Once we had a game plan for the day, we headed off to Capitol Hill, clutching our bright orange folders, sporting our orange infertility awareness Ribbons.  This proved to be very helpful during the day to spot others as we wondered the halls of Capitol Hill.  I hadn’t realised how easy it is to knock on the door of your Senator or representative (If you can find their office that is!!)

Our first appointment was at 1130AM with Senator Tim Kaine (Democrat) and we met with his aides for tax issues.  The only place that could fit all 20 or so of us was in the hallway, so there we were talking about our issues, asking for the Senator to cosponsor the bills.  Someone from our group gave their personal stories of struggles.  I cried. And at the end, I handed over all the letters from other constituents asking for what we had just asked for, as well as some more supporting information for the Senator to consider.  It was pretty easy, yet empowering.  This was our opportunity to create awareness and make change happen.  Right there, right then.  15 minutes.  That is all the time we had.

We had some time to deliver some letters to a few other Senators, so we broke up into smaller groups to achieve our mission.  I went with a lady who had been to advocacy day several times before and another who was a newbie like me!  Before we went into the office we did a quick bit of research on the Senator to see what their position might be in anticipation of getting a meeting with one of their staffers.  The first Senator who’s state will remain nameless, there was very little we thought they would be supportive of.  So what did we have in common?  When it comes down to it, a family.  He has children, so there was something at least! After all we are advocating Pro-family!  Unfortunately no one was able to meet with us.  But we dropped off the letters from his constituents, material about the bills we were advocating for and collected a business card of the relevant aide to contact later on.  We did the same with two other Senators before we ran out of time and needed to get to our next appointment.

My second appointment was at 1230 with Senator Mark Warner (Democrat) and we met with his aide for veteran’s health.  This time we had different people speak, and I cried again when someone gave their personal story of infertility struggles, and a lady who worked as an adoption social worker told her perspective.  The other group managed to meet with the Senator and snag a photo with him!

Time for some lunch!  All our other meetings were the other side of the Hill, so we managed to get a ride on the underground trolley that connects with the Capitol building.  I didn’t get a picture, but I felt like I was in a James Bond movie!  very cool.  We found somewhere to eat eventually and collected ourselves in preparation for my meeting.

My third appointment was with Congressman Donald McEachin at 3PM.  This was a far more intimate meeting with one of his aides, we sat in the Congressman’s office, which was the Pi Office – 314!!!!! We talked about the issues on the table and it seemed like Donald McEachin would be very supportive of what we were asking for.  I am hoping to see his name as co-sponsor!!  Just as we were finished he came into his office, so we introduced ourselves and why were there today, and we were able to get a photo with him!

We had some time to do more letter and material drop offs with other Reps and emptied our bags of letters.  We delivered them all!  Unfortunately there was a health committee meeting going on so many of the relevant people were not in office available for any impromptu meetings.  We managed to find somewhere to get coffee – there was a dunkin donuts in one of the house of representative’s building’s basement.  I made the joke that America literally does run on Dunkin.  True fact.

The final meeting of the day was by far the best.  I joined Chris, Candace and Allison from my local support group on their meeting with their representative, Bobby Scott.  I live on the corner of three congressional districts so I actually work in his district and was excited to be able to talk with him too.  His aide listened with intent and understanding, she asked some awesome questions.  Including what we were doing to support women and families of colour.  A great question because it is so important.  It seems that the congressman too would be supportive of all our issues.  Half way through our meeting he came in to meet us and took a picture with us!!! He had just come from a foster child shadow day and had the most amazing tie on.  So appropriate and so timely for what we were advocating for.  His staff were so warm and friendly it was the perfect end to the day.

To round off the day we all met up for refreshments and a taco bar, swap our experiences and sit our weary feet down.  I think I spent the first 6 hours of the day on my feet!  Luckily I was well prepared and wore flat shoes.  An absolute must to survive the day.  I left the day feeling excited that I had the opportunity to make important people in the legislative work understand how they can help build families in America.  For my American friends, my virtual friends and for my daughter, an American citizen.

I’ll be going again next year for sure.  Next year this new bill will be coming of age, and may be even issues relating to Personhood bills may be on the agenda.  What I do know is that there is still a lot of work to do.  So who’s joining me???!!!

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Candace and Chris #FlipTheScript

I have no idea where Candace & Chris get their strength from, they have been through hell and back, and back again…and again.  Candace is our local Resolve infertility support group leader, she has helped me and so many, many others in our community survive at our lowest moments. 

Candace and Chris are here to #FlipTheScript for national infertility awareness week, here’s their story…

First of all, tell us a little bit about you and your partner….how did you meet?!!

Chris:  It turns out that we met in college … FYI college relationships can work.  We were both working at a restaurant.  We both went to a colleges close to each other. Candace likes to say that she is a way bigger college football fan than I am, that is probably true.  I was a cook and Candace didn’t know my name for the first year we worked together.  We started dating thanks to a school bus hitting Candace’s car.  She missed several weeks of work and I asked where she had been when she came back.  Once we started talking, we realized how similarly we saw things and, clearly she was immediately smitten. Plus I had sweet dance moves. It was probably the dance moves that roped her in.

Cue wedding bells, doves and white picket fences.

When did you realize that you were facing a diagnosis of infertility, how did you find out and what were the issues that you faced?  

Chris: We always kind of had an idea that we weren’t going to be overburdened with abundant fertility.  We had prophylactic mishaps and similar situations that resulted in no unplanned pregnancies.  We tried to get pregnant for about a year to no avail.  After that, we started getting serious with ovulation kits, various Olympic-level feats of post-coitus positioning to improve the change of pregnancy, still nothing.  That is when we decided it was time to seek professional help and started with Candace’s OBGYN.  After calling on that doctor several times, we had a “getting to know you” meeting with our eventual RE at the infamous Jones Institute.

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Where are you on your infertility journey now?

Chris:  Well, we have gone through years of fertility treatments including 6 rounds of IUIs, IVFs, and IOUs with no success. Candace actually had precancerous cells detected in her uterus requiring a partial hysterectomy.  We had 2 frozen blastocysts left after the surgery and our “Wonder Surro” said she would carry for us.  We were terrified on the day of that transfer but, after 9 stress-filled months, welcomed our daughter.

(Here is a link to Candace and Chris’s amazing video of how their daughter came into their lives -**trigger warning** – and you will also need some tissues)

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Now, we find ourselves in limbo yet again.

We had another gestational carrier come to us out of the blue and offer to carry a sibling for us!  Contracts signed, psych evals completed, Candace drugged, stimmed, and extracted, I did my part with my plastic passion cup to provide a sample, blastocysts grown and frozen + PGS tested per request of our gestational carrier… then out of the blue and only a few days prior to CD1 to transfer, she backed out.  We don’t have the faintest idea how we will move forward and we have 3 amazing, genetically screened and given a grade A health, ready to give life a try.  But, they have nowhere to attempt that reality. We are just now picking up the emotional and financial pieces.

Has infertility changed your relationship with your partner? 

Chris: Absolutely.  It has changed how Candace and I interact in different ways at different stages of our infertility journey.  When we were trying to conceive, everything was for a purpose.  Passion, romance, and intimacy had to wait outside the door.  It was clinical.

Now, with our little one through surrogacy, we are working to balance the feeling to grow our family with the feeling to “be” a family and that has been tough. 

Through all of the struggles, we have decided to use them as opportunities to grow stronger instead of apart.  Although we haven’t completely gotten through the storm, I hope we are nearing a place where our worries and confrontations will be on more mundane topics like dinner and laundry instead of whether or not to try to create life when the “normal” routes simply aren’t an option.

How has infertility impacted you financially? Did your healthcare insurance provide coverage for infertility treatment?

Chris: Simply put, we would have a second child either now or soon if finances weren’t central to the issue of infertility.  Our surrogate that backed out was planning on being a compassionate surrogate, meaning there was no surrogacy fee, however we would cover everything else.  Even so, we completely tapped out our resources to get to the point that we have blastocysts to transfer.  Now, with her backing out, we are completely incapable of supporting a compensated surrogate and really don’t have any options.  If we could cover the surrogacy fee, we would have moved forward long ago.

We have sacrificed so many things to pool resources for our various procedures through the course of our infertility journey.  Vacations, our home, cars, loans, a myriad of other ways that we would be in a very different financial situation had it not been for our fertility issues. 

That being the case though, if it took all that we did to get our daughter, I would do it over 100 times. Family is more important than our financial status.

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How have you taken care of yourself physically and emotionally during your struggles?

Candace: Wine. Copious amounts of wine.  Kidding..kinda. Honestly, our journey has been so long that what may have worked at the beginning of our struggles is much different than what works now. I am older, I have more scars since my first IVF and I have parted ways with few more tears since then.

Through it all, finding support in others, with others and for others.

I got involved with online communities, we began a blog, I started a local RESOLVE: The National Infertility Association support group. We both go as a couple each year to Washington, DC for Advocacy day and fight for better legislation and fight against anti-family building legislation so that the next us has less barriers to overcome. It is taking something so incredibly negative that has happened to us and flipping it into something positive and change issuing.

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How have your friends and family supported you through your journey?  

Candace: We were silent about our struggle for many years until the levy broke. We felt like other people had to feel the way we were feeling and there was no way were alone in our infertility diagnosis. We started our blog and cervical mucus, broken lady bits and plastic cups because it was a topic we talked about regularly. A weight lifted and something transcendental happened, people stopped asking when are you going to have a baby to how can we support you? They helped us fundraise, sent wine and ice-cream on beta days. They started to get a clearer glimpse into our struggle.

Have you had any experience of lack of support or misunderstandings? 

Candace: We had a daughter through surrogacy. Let that sink in for a moment. If you think IVF is misunderstood…. Whoa the comments that flooded in when we announced we were expecting through surrogacy.

Did your husband sleep with your gestational carrier? No- because um, science.

Does your gestational carrier have visitation rights? Also no—because um, genetics and legal paperwork. (our bun, her oven type of arrangement.)

Although the questions we received were crazy and bizarre and throat punching worthy, it was an open door to educate people on surrogacy and infertility.

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Have you lost any friends along the way?

Candace: Yes. But now most of our friends that were lost have been re-found. Mostly many of them didn’t know what to say, or do.  They were also off being Duggars and Chris and I were all like “hey look at this sweet Halloween costume we bought for our dog.” The gap of where were in life was growing.

Infertility is the thief of joy and it robbed me of celebrating amazing events with close friends. At the time it was self-preservation, most of my friends understand that now.

Are there any special messages to any friends or family who have been your rock that you would like to give a shout out to?

Candace: Goodness. There are way too many and at some point this post will have to end.

–you all know who are, love you, mean it.

I will say, having a husband (yeah, I am talking about you Chris) that is all in, all the time no matter what our circumstance, is what has kept our foundation rock solid.

In something like infertility, it is a couple’s disease and it is lonely. I have never been alone because of him.

What has been the hardest point of your journey and how did you deal with it?  

Candace: We’ve had so much failure. So much.

We have experienced everything from brain tumors (Chris), cancer scares, and infertility.  All have sucked lemons in their own unique way. I think we really took our recent surrogacy failure hard. It wasn’t because it didn’t work, it was because we were led down that path, and I went down that path with hope and reckless trust. We created a new set of embryos with the promise of a few tries if the first transfer did not take. Now, we are faced with a decision we never thought we would have, which is donate them to another infertile couple and let them have a chance at the child, the sibling, we so wanted or do we put our financial future at risk. Apart from that, I felt blindsided through it all.

What was your inspiration to keep going?

Candace: Time. Time heals but it leaves faintly visible forever scars. I am OK with that. Because now that I am a mother through surrogacy I am proud of them and I know where they lead.

So what is my inspiration to keep going? Hell hath no fury like an infertile woman who wants a child.  Let me be clear though, that keep going push doesn’t always lead to a dirty diaper.

It may also lead to resolution of your fertility journey and resolution no matter what it looks like is a good place to get to.

If you could go back in time, what advice would you give yourself?

Candace: Advocate for yourself.

No one knows your body and future family like you. Ask questions, second guess answers. Take control of your infertility. It took a long time to get there but I wish I would have had a DeLorean with a full flux capacitor to go back in the future and pimp slap my past self.  I also would have probably invested in Apple. Hindsight, amaright?

As it’s national infertility awareness week, what message do you want to share about infertility to the general public? 

If you know someone who is struggling to conceive, hug them, send them a card –check out what Celmatix is doing in trying to help people “say the right thing” via card. Be there.

If you are going through infertility, find a tribe. Find people who get it. Get support.

If you have resolved your infertility don’t forget your tears. Remember what you felt like before them. Give back so that the next 1 in 8, our future has less of struggle.

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You can find Candace and Chris at www.ourmisconception.com, follow them on instagram @ourmisconception (by the way they are taking over Resolve’s instagram this week so watch out for them!) andfacebook here.

Please leave a comment or message of support below for Candace & Chris 🙂

Alisia #FlipsTheScript

Alisia’s story is one of hope for a group of people who are often overlooked when it comes to infertility…women who are unable to carry their own child as a result of other illnesses and treatments. 

Alisia is here to #FlipTheScript for national infertility awareness week, here’s her story…

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First of all, tell us a little bit about you and your partner….how did you meet?!!

I’m an Air Force brat so I was born in Texas, spent most of my childhood in Okinawa, Japan and moved here to Hampton Roads, Virginia right before I started high school and have been here ever since! My husband Craig, was born and raised in Portsmouth, VA and although he would prefer to stay here forever, I appreciate that he loves to travel and explore other places. Craig and I actually went to the same high school. He is two years older than me so I didn’t know him personally but I knew of him. One summer night in 2006, I was out partying with my friends in downtown Norfolk where Craig and I ran into each other.  We started talking because we recognized each other, kept in touch, and eventually started dating. Fast forward five years from there, we got married!

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When did you realize that you were facing a diagnosis of infertility, how did you find out and what were the issues that you faced?  

In 2008 I received a kidney transplant from my little brother and after having two kidney rejection episodes, my doctors strongly encouraged me not to try to get pregnant both for my health and the health of my unborn child. A few years later, my sister Stephanie, nonchalantly suggested that she would carry our baby for us, but back then I didn’t really think anything of it because I wasn’t yet seriously trying to start a family. Craig and I had a plan that we would focus and enjoy just being married for a few years and then talk about starting a family.  So in 2014 we talked to my doctors about our options, again they advised that I not try to get pregnant.  That’s when I went to my sister and with no pressure at all I asked her if she was actually serious about being a gestational surrogate. She was!

Where are you on your infertility journey now?

After almost 4 years of appointments, medications, infertility shots, multiple egg retrievals (due to my very low egg quality), various procedures for my sister (to ensure an optimal uterine environment), we are finally expecting our child this August!!

To say this was an emotional roller coaster doesn’t do this IVF process any justice.

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Has infertility changed your relationship with your partner? 

I believe this process has brought Craig and I closer together. We both have been excited, disappointed, frustrated, completely ignored the process for a while, and even considered a child-free life together. There were times where I felt alone but later learn that Craig wasn’t expressing his feelings in order to protect mine. Although there were times where we were a little down about the whole situation, I think the biggest impact this experience has had on our relationship was our effort and determination to take advantage of the time without a child to focus on doing what we want, whenever we want, either alone or together.

My relationship with my sister has definitely grown stronger. We are 5 years apart so we didn’t always have a lot in common, but now that we are older and are going through this experience, we talk to each other every day now!

Stephanie has an 8 year old son as well and I try to keep him involved and show him as much love as possible since he’s been the only child in the family for 8 years now he’s used to all of the attention. My entire family is doing their best to reassure him that our love for him will not change when his cousin arrives.

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How has infertility impacted you financially? Did your healthcare insurance provide coverage for infertility treatment?

I’m not a gambler but IVF is a HUGE gamble. Although we were blessed to have been able to afford everything and come out of all of this process debt free, I can’t help but think of all the money we’ve spent on medicine, appointments, procedures and ultrasounds for all of those failed attempts. My healthcare provider covered a lot of the first IVF attempt and most of the medicines and injections for me. My sister’s company didn’t have coverage for IVF-related services so all of her expenses were out of pocket for us. We also had expenses related to legal fees for our surrogacy contract as well as psychological appoints both required by our fertility clinic for my sister to be cleared as a surrogate.

How have you taken care of yourself physically and emotionally during your struggles?

I have not. The constant disappointment really caused me to become very depressed and sad. I tried various types of therapy, anxiety medications, crying to friends and family, and natural remedies like yoga and meditation but nothing really got be out of my funk. The only thing that really helped was making plans for another IVF attempt. I think it helped because at least I was taking steps and tweaking protocols to better the probability of finally getting that BFP (Big Fat Positive!).

How have your friends and family supported you through your journey?  Have you had any experience of lack of support or misunderstandings?  

My friends and family have been extremely supportive. I really appreciate those who don’t understand what it’s like to experience infertility not asking me about how things are going and not talking about babies or children.

That was certainly my biggest trigger. I’m not one to really talk about my feelings all the time and most times I just hold everything in. I did my best to avoid conversations about pregnancy, babies and children when by friends started talking. Most of the time they realized I was getting uncomfortable. I hated to be a “Debbie Downer” but I couldn’t help the way it made me feel.

What has been the hardest point of your journey and how did you deal with it?  

The hardest point of my journey was when I was seriously considering giving up. I did research on child-free marriages/lifestyles. As much as not having as child gives you the freedom to do so many other things in life, that wasn’t what I wanted for my life. It just made me sad. My inspiration to keep going came from my husband and my sister. I had decided to give up because I was feeling the guilt of taking up so much of my sister’s time from expanding her own family, and I didn’t think we were getting anywhere with the multiple IVF protocols. My sister actually came to me one day and said she thinks we should just keep trying. Craig knew that I had also been looking into adoption and mentioned one day that we shouldn’t give up just yet of having our own biological child either. So, Craig provided another sample for cryo-preservation. In the state of VA at the time, when you use a surrogate, you are required to have your sperm specimen quarantined in cryo for six months before using it for IVF even after passing all of the health screening and testing. The fortunate part was that this wait allowed us to take a break from everything baby-related for six months and just enjoy life.

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If you could go back in time, what advice would you give yourself?

I would tell myself to try not to worry so much. I would also tell myself that I’m not a failure and I’m not any less of a woman because I couldn’t bear my own child. In addition, I would tell myself that no matter how many times I hear, “having children is the best thing that has ever happened to me” or “being a mom brings new meaning to life”, etc., don’t let it make you think you or your life is any less important.

As it’s national infertility awareness week, what message do you want to share about infertility to the general public? 

Although it is national infertility awareness week, if you are dealing with infertility, don’t feel guilty for not telling people what you’re going through in your own infertility journey.

Who, when, and how much you tell about your experience is up to you and your comfort level but know your story will most likely help someone out there who feels alone or feels like infertility isn’t as common as it is.

Is there anything else you would like to share that I haven’t asked you about?

While I’m super excited about being a parent,  I’m sitting here typing these responses, four months away from by baby’s due date super nervous about how my life is going to change, my relationship with my husband may change, and hoping that I don’t mess this motherhood thing up. You’d think that after years of wanting this so bad, I’d have done all the research I could possibly do to feel as ready as I possibly could but I didn’t because I didn’t know if this day would ever come. In the meantime, as I count down these next 4 months, I’m celebrating my “lasts”. My last Christmas without as child, my last Valentine’s Day, and my last weekends of doing whatever I want, whenever I want with Craig, my friends, and family, while shopping, planning, prepping for the arrival of little baby Nixon. 🙂

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Please leave a comment or message of support below for Alisia and Craig 🙂

Kristy #FlipsTheScript

Kristy is a fabulous blogger, she tells it like it is, but I didn’t meet her online. We met at our local Resolve infertility support group where I quickly discovered that she is relentless in her dedication to support couples struggling with infertility.

Kristy is here to #FlipTheScript for national infertility awareness week, here’s her story…

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First of all, tell us a little bit about you and your partner….how did you meet?!!

Dave and I met the summer before my senior year of college in 2001. He was in the Navy Reserves and also owned his own business. We didn’t hit it off at first, but shortly after we started dating I knew he was THE one…and then 9/11 happened. He left September 12th. I never thought I would see him again. He returned later that month, and we were engaged a few months later.  We both knew we wanted to spend the rest of our lives together. We got married in May of 2003 and talked about starting a family in the next year.

Kristy - April 20 2018

When did you realize that you were facing a diagnosis of infertility, how did you find out and what were the issues that you faced?  

We didn’t realize we were facing a diagnosis of infertility for quite a while. During our first year of marriage, we weren’t trying to get pregnant and were actively preventing it. A year after we got married, Dave was called to active duty with orders to Iraq and we were moving states. We decided to start trying for a family before he left, but we were unsuccessful. When he came home, we tried again in between deployments and training exercises. We tried for years; charting, testing, plotting, taking temperatures, the whole nine yards!

I refused to get tested or even think about treatments. It was my belief that if it was going to happen, it would happen….it was out of my hands.  It took me over five years to accept the fact that getting help was okay.

We both got tested and had the results, but I wasn’t ready to move on yet.  I still had this longing and desire that everything would still work out. I didn’t want to mess with God’s plan for me. I thought it was too risky and something I wasn’t comfortable with, so we waited….and waited…and waited.  We waited a few more years.

We decided together that it was time.  I had accepted it, come to terms with it, and finally knew it was the right thing to do. We made an appointment at our local fertility clinic and started the process again.  The testing, the prodding and all of the ‘fun’ and uncomfortable ultrasounds, dyes and needle pokes. We had our diagnosis and we were ready to move forward. We were diagnosed with male infertility, but had options.  We were strong. We had a plan.

We jumped right in with three back to back IUIs (Intrauterine insemination), and then gave my body a break after all three treatments failed. We tried again with two more IUIs before we took another break. We then saved and fund raised in order to move on to IVF (In vitro fertilization). We tried IVF twice without success. We were devastated. We thought that our only hurdle in making a baby was male factor, but my body kept failing me over and over without reason.  We took another long break before trying another IUI, which failed again.

We were out of money, and out of hope. We decided to try again, but had to cancel two cycles because my ovaries were not responding to the hormones, so we waited again.  Finally, we tried again, one last time. We did 2 IUIs in 24 hours and we waited. Both had failed.

Where are you on your infertility journey now?

After 13 years of trying and countless infertility treatments, Dave and I have chosen to live childfree.  It was not an easy decision, but the best one for us.

We tried.  We gave it our all, but infertility treatments don’t work on everyone. We have come to accept that.  I never thought in a million years that I would be the one living childfree, but I am, and I couldn’t be happier and more content. 

I don’t regret all the years of trying, all the failed treatments, and all the money we spent. We truly gave it everything we had, but now we are living life differently. We plan differently.  We look to the future differently.  We love differently.  All because we tried and we failed, but we came out on the other end.

There is a different path. There is a different plan.  We are happy. We are enough.

Has infertility changed your relationship with your partner? 

YES!  Infertility almost tore us apart at one point.  Our first failed IVF was the hardest for me.  I pushed Dave away. I needed to grieve and couldn’t let him close because I thought I would break into a million pieces if he touched me. My body had failed us yet again, even with perfect embryos. I couldn’t look into his eyes thinking I would see his disappointment, but I was wrong. He needed me as much as I needed him.  We needed each other, because that’s all we had.

We are actually closer now more than ever.  We have our ups and downs, like any marriage, but in the end our years of infertility has brought us closer.  We love harder and don’t take anything for granted. We know nothing is guaranteed, even if all the stars align. Our love has grown, and nothing can break us…we have proven that!

How has infertility impacted you financially? Did your healthcare insurance provide coverage for infertility treatment?

Financially we feel like we are starting over from scratch. We have drained our accounts because even though we are covered with two different health insurances, nothing was covered except for a few doctors’ visits. We had to take breaks in-between so many of our treatments, just to save up to try again.

How have you taken care of yourself physically and emotionally during your struggles?

I love to do yoga, and this has helped me both physically and emotionally during treatments. I have learned how to center my thoughts and also clear my mind during each treatment.  I love to read and spend time at the beach just staring off into the ocean.

Physically, all of the infertility treatments have wreaked havoc on my body. The infertility drugs and synthetic hormones have done a number on me, and I’m working hard to get my “pre-IVF” body back! :).

How have your friends and family supported you through your journey?  Have you had any experience of lack of support or misunderstandings?  

Most of my friends and family have supported us 100%.  I have lost several friends, but in retrospect, that’s okay. It was very hurtful and sad when it happened, but they didn’t know what to say or how to be supportive when they were having kids and I was left behind still trying. I don’t blame them now, but I’m sad. They didn’t know what to say, or how to act when all of my dreams were being crushed and their life was moving on. I’m happy for them, especially now that I’m in a much better place.

Not everyone is going to understand our decision to go through infertility treatments, and more so now that we have decided to stop and live childfree.

For those of you that have been with us since day one supporting us and are still here supporting our decision to live childfree, I can’t thank you enough!

What has been the hardest point of your journey and how did you deal with it?  

The hardest point of our journey was every single failed treatment. The money that was spent, just for yet another failed result.  It was never ending. Dave was my rock and my inspiration and HE is what kept me going.  He never left, and was always there, even when I pushed him away.  He never gave up on me, and made it possible for me to never give up on myself.

If you could go back in time, what advice would you give yourself?

If I could go back in time, I would tell myself to not shut Dave out during our failed treatments.  He was grieving too, and I was too selfish to see it. I needed him and he needed me, but I couldn’t see it. I wanted to crawl in a hole and never come out, and I couldn’t see that he was hurting too.

I would also tell myself that it works out in the end.  It may not be how we planned or hoped, but it works out. You will be okay. You will be stronger. You will be enough.

As it’s national infertility awareness week, what message do you want to share about infertility to the general public? 

Infertility is a disease.  A disease that is treated like no other disease out there.  A disease that is looked upon as shameful or a choice. I wish that more people didn’t feel so ashamed of their disease and I hope they know that they are NOT alone!

Is there anything else you would like to share that I haven’t asked you about?

Choosing the childfree option as a resolution is NOT the same as a forced childfree option. 

There were many years I felt like I was being forced into a childfree option because we were out of money, options and hope.  This is not the same as where we stand now.  Choosing childfree is freedom. The weight and pressure has been lifted from us. We are happy, and are living life differently than when it wasn’t our choice.

Choosing childfree has been the best thing for us, and we haven’t regretted it for a single second. I know I’m happier. There’s been a weight lifted. I can finally look in the future and not wonder ‘what if’. We are starting to make new plans. New dreams. New adventures. New beginnings….together!

Kristy 2

You can find Kristy at TTCaTaxsonBaby.blogspot.com or follow her facebook page here.

Please leave a comment or message of support below for Kristy and Dave 🙂

#FlipTheScript for National Infertility Awareness Week

I thought hard about how I could help with National Infertility Awareness Week, and I thought about how long I have been talking about this important week on my blog.  I started this blog over three years ago (yikes!) and as I have shared our struggles with infertility with the world people began sharing their stories with me, usually in confidence.  Family, strangers, friends, colleagues, friends of friends have reached out to me over the years.  Because talking about infertility is not easy and it’s not the kind of subject that comes up naturally in conversation.  “Oh hey, tomorrow I’ve got a date with a Reproductive Endocrinologist…you know, because I’m infertile”  There are massive mis-conceptions about infertility, treatments and alternative options to build a family, so it’s not really surprising we don’t talk about it.  I don’t really know what compelled me to begin blogging, but I am glad I did.  So… this NIAW I wanted to offer people struggling with infertility a platform to share their story with their friends, family and the world.  Over this special week I will interview some incredible infertility warriors.

I want to share how different every single journey to build a family is.  I want to show that infertility is a complex disease.  IVF isn’t always the answer and when IVF is the answer that treatments are often an art rather than just science. There are many barriers for millions of people who struggle to build a family that include lack of insurance coverage, out of pocket costs, faith and religion, sexual orientation, and state and federal laws.  The impact of infertility is far reaching – it impacts our family, friends, co-workers and employers.  I want to #FlipTheScript, this year’s theme, to breakdown the barriers and bring the reality to our friends and family.

I take the pledge:

  • I pledge to breakdown the stigma of infertility and share my story
  • I pledge to help RESOLVE make a difference for people with infertility
  • I pledge to be a voice and join in our advocacy efforts
  • I pledge to help support others who are struggling with infertility

Stay tuned 22-28 April 2018 to hear some incredible stories!!

Why can’t we make a baby? #NIAW

Why?  Why me?  Why can’t I make a baby like all my other friends and family? I have so many questions about why after almost 2.5 years of trying to conceive and failing miserably, month after month.  What have I done to cause this?  Why won’t my body just get pregnant? What am I doing wrong?

It’s human nature to want to know why things happen.  But these are the type of questions that run through my head round and round, continuously ever since we decided to grow our family.  I have yet to answer any of these questions.  It is exhausting.

Chris and I are 1 in 8 couples of child bearing age in the US that struggle with the disease that is infertility.  We tried the good old fashioned way – sex – for 11 months before we went to seek specialist help from a reproductive endocrinologist doctor after we discovered that Chris’s testosterone levels were “below normal”.  It turned out for us that testosterone levels do not actually matter that much when it comes to fertility.  Chris actually had super sperm, and lots of them!  But it did lead us to start the typical tests for diagnosing infertility.

We thanked our lucky stars that all our test results came back normal – there was nothing seriously wrong with either of us.  In fact, we passed all our tests with flying colours, we were top of the class!  But this put us into the category that 20% of infertile couples are diagnosed with – unexplained infertility.  This meant that the doctors could not tell us why we hadn’t been successful so far in trying to conceive the way they teach you at school.  We were about to embark on a journey that was going to take us beyond what they taught us at school – we were going to try to get pregnant with medical assistance.  We were heading into the world of the unknown.  We knew little to nothing about infertility.

At first it was difficult to explain to our friends and family why we were seeking treatment, because there was nothing ‘technically’ wrong with us.  The infertility was inexplicable!  It was embarrassing, it was awkward to explain.  So this is why I started this blog, to help us get over this difficulty in explaining what we were doing and why, as well as helping to explain our feelings about our disease in general.

Unexplained infertility in someways has been a good thing – there is always hope that this treatment will work.  But ultimately it is difficult to accept that there is just no known reason that this isn’t working for us.  In some cases, going through medically assisted treatment for infertility can reveal the explanation of a couple’s infertility.  But in our case, after 3 IUIs (Artificial Insemination) and 3 cycles of IVF (In-Vitro Fertilisation), 1 suspected ectopic pregnancy,  and over $90k of medical bills we are none the wiser as to why we do not have a baby in our arms yet.

Conception is a wondrous act of nature, but it is also an incredibly complex process  – there have to be many stars in line for a healthy baby to be born.  For something that is the very basis of our human race’s existence, we still know very little about the disease that prevents us from growing our families.  It’s incredible, right?

I am currently in the dreaded two week wait of our third (and final) IVF cycle.  If this cycle fails, apart from being devastated, I do not know how we will ever be able to move forward without knowing why this has happened, why medical treatment didn’t work for us.  Our infertility will never leave us.

For National Infertility Awareness Week (NIAW), the national non-profit infertility organisation Resolve is promoting this year’s theme #StartAsking.  The theme is about promoting the questions that we want to be answered, whether this is asking for our Employers to provide insurance coverage, asking for legislation that supports family building options or asking our friends and family to support us.  For me, the one question I have and want to raise more awareness about is to:

 #StartAsking for more targeted research on unexplained infertility.

Perhaps if we can understand more about how or why some couples are infertile, then better focused medical interventions can be developed to defeat infertility.

I want answers!!!! But we won’t ever get answers if we don’t talk about infertility and unexplained infertility.  It shouldn’t be a secret.  We can do this by speaking openly about infertility, by getting organisations like Resolve to help raise our community’s voice and build awareness.

If you would like to know more about infertility, please visit Resolve.org.

If you would like to help, you can contribute by fundraising or donating for Resolve.  Or just comment below with your questions and thoughts to join in the discussion!

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National Infertility Awareness Week #StartAsking

It’s almost National Infertility Awareness Week here in the US, 24-30 April 2016.  I don’t know if there is an equivalence in the UK, Canada, Australia, NZ or wherever you are in the world, but seeing as my blog lives in an international community I believe it should be an International Awareness Week (So doth Dani declares!).  So join us!

Here are some ways you can ALL get involved to help spread awareness of this disease, whether you are infertile or an infertile loved one’s supporter.

Learn more about infertility.  Because knowledge is power.

If you are family or a friend of an infertile loved one then change your facebook profile picture to this.  You can download the picture from here.

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If you are 1 in 8 couples you can change your facebook profile picture to one of these:

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or my favourite…..

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Let people know that infertility is a disease by using the phrase, “the disease of infertility” whenever you talk or write about infertility.

If you don’t know what to say to someone who has infertility, then you can read this article: “25 Things to say (and not to say)” from Resolve.  If you are finding that some friends just don’t understand your infertility and are saying unintentionally hurtful things – share this link with friends and family so you can help them to help you.

Infertility is a couple’s disease, there is a mis-perception that infertility is a woman’s disease, this is not true.  So don’t forget all the men who are affected too.

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So what am I doing for National Infertility Awareness Week?  I have been prepping some microblog posts, one-a-day, on the subject of this year’s theme #StartAsking – I will also be posting on my personal facebook page – eeeeeeek!!!!

I am participating in Miss Conception Coach’s Bloggers Unit Conference!!!!  Watch this space for my article!  You can follow her on wordpress and see all the inspiring articles for the conference, her instagram is @missconceptioncoach – she posts lots of beautiful and inspiring words of wisdom 🙂

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My local infertility support group is running an information desk at our local clinic throughout the week, and I will help man it for a few hours to make people aware of who we are and what the support group does 🙂

As part of Resolve’s Advocacy day some members of my local infertility support group are visiting Washington DC to talk to members of congress about important family building issues.  I can’t go because I have to work (Boooooooo) but they will be taking my letters I have written to our Senators and Congressman with them!

And of course I will be doing all the social media stuff too.

 

OK that’s a lot for now!!!! TTFN!!!

 

IVF Diary vol III: 10 -14 Apr 16

Medication(s) administered and dosage(s). Wait and Hope Phase Day 3 (i.e. the bit between Egg Retrieval and Transfer!).  PM Progesterone in Oil 1ml Intra-muscular injection, vivelle dot estrogen patches 0.1mg x2.

Medical procedures undertaken. Egg retrieval – I wrote about it in a separate post here.  Basically the procedure went well, but I was in pain immediately waking up from the anesthetic.  I had Ovarian Hyper Stimulation Syndrome (OHSS) by the time I got to the day of Egg retrieval, so the pain was to be expected (according to the doctor – I was oblivious).

Any results? 17 Eggs retrieved, 12 of these were mature, and 10 of those fertilised.  The clinic’s protocol is that if you get 7 or more fertilised eggs then they aim for a Day 5 transfer.

So when I woke up from the egg retrieval, the doctor tried to explain to me the symptoms of OHSS and that I need to watch out for certain potentially dangerous symptoms – such as shallow breathing and vomiting.   Apparently she explained all of this to Chris in a whole lot more detail whilst I will still recovering, which was a good thing, because my exact recollection of her words were shadowed by the pain I was having in my abdomen!!!

I put together a nice little chart showing how for this cycle my estradiol levels sky rocketed in comparison to my previous cycles and what we got out of them.  Remember, we are trying for quality not quantity!!!

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What are my symptoms?  The day of my egg retrieval surgery (Monday) and the day after (Tuesday) I was practically in bed for most of it, or sedentary on the sofa.   I was suffering with gas (farts and burps galore!), pain in  my abdomen particularly above my belly button and below my lungs.  The pain killers really weren’t helping much with the pain, they just caused constipation, so I gave up on them.  I could barely eat a plate of food.  I ate small portions of soup and bread, I tried to eat salad, but that filled me up after a few bites and made me feel nauseous. I couldn’t even drink much water/gatorade my tummy felt like it was about to puke all the time.  Wednesday I braved work because I had to get up and move around.  Mentally I was fine, but the lower half of my body was not playing ball.  So I left work after lunch to work from my bed instead because all I needed was to lie down propped up.   Lying down completely flat and sitting upright/standing weren’t particularly comfortable, but hunching over a bit was OK. I went to bed last night swearing that if I was not better in the morning I would be calling the clinic for an ultrasound.  Well despite a crappy nights sleep, I did feel a bit better once I got up.  So I weighed myself and measured my waist.  No change – but I was still almost 8 inches wider round the waist and 5lbs over my normal weight.  I wasn’t getting worse – just not any better, I decided not to call for an ultrasound.

This morning we both waited until 0800 before getting on with our lives because this was the time that the clinic would have called if we were to go in for a Day 3 Transfer, just in case some of our embryos weren’t surviving.  But they didn’t call, and we breathed a sigh of relief.  Although we know from our last cycle, that this doesn’t mean we have good quality embryos waiting for us on Day 5.  So without any updates on their progress until the day of our transfer, all we can do is hope they keep growing strong.

How do I feel today? I was feeling really down yesterday about my OHSS symptoms and frustrated with my body.  I am not a good ill person.  I was pretty grumpy at Chris too.  On Tuesday I decided to enlist the help of my friends and gave this status update on facebook:

“Please send us a happy thought for us as I tuck myself up with a hot water bottle, drinking fluids and electrolytes and eating salty food as I try to ward off the symptoms of ovarian Hyper stimulation syndrome so that we can transfer our embryos this week!!! Anything to make us smile would be greatly appreciated! Post your favourite funnies below! (Although not too funny because my tummy hurts!!!)”

In the spirit of National Infertility Awareness Week‘s theme #StartAsking….I decided to ask for help from our friends to help us get through this rough patch!  I am glad I did 🙂  I received many funnies…and gave me a smiley warm feeling inside that my friends were thinking of us.  They say laughter is the best medicine!

Also, if I am honest with myself I am nervous that we have one less embryo than from IVF cycle 2….but I must remind myself QUALITY not QUANTITY is important!!!!

What’s next? Our Embryo transfer is scheduled for 0700 Saturday morning!!! Yikes!!  I can’t wait to be PUPO – Pregnant Until Proven Otherwise 🙂  Oh and I need to do this progesterone in oil injection on my own.  *GULP* my mountain, my nemesis :-s

The Final Countdown!!! 

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*Notes.  I take First Response Reproductive Health multi vitamin gummies (pre-natal), 5mg Melatonin at bed time and CoQ10 200mg gummies daily.  NSTR = Nothing Significant To Report.

IVF Diary Vol 2: 2-8 Feb 2016

Medication(s) administered and dosage(s). Progesterone in Oil 1ml Intra-muscular injection, vivelle dot estrogen patches 0.1mg x2.  I have failed to pierce the skin myself yet, I am so close, but I have managed to do everything else, including doing the actual injecting part…I had a couple of mis-haps, including one evening as I removed the needle, blood gushed from the injection site.  The blood poured down my leg and I just managed to catch it before it landed on the nice white hotel towels.  I have no idea why it happened, I guess it’s going to happen once in a while.  The injection site was sore for a couple of days after that 😦

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I had to put a plaster (aka band-aid) on this one after the blood gushed from this injection site!  Minions to the rescue!

 

Medical procedures undertaken. Nil

What are my symptoms?  I have had a few sharp pains and cramps here and there.  All good signs I guess.  I have also managed to catch a cold and sore throat. WHYYYYYYYYY??!!?!!  Now the wisdom of the internet says this is an early pregnancy symptom. Well, it is the runny nose/cold part which is the symptom that can be explained by the extra estrogen caused by the pregnancy, apparently that creates a stuffy nose.  Well, I have a sore throat and that can’t really be explained by that theory.  Some argue that your immune system drops after implantation.  Well in my case, this cold was inevitable because it was going around at work.  I was the last person to catch it because it was going around mostly when I was out of office for the stimulation/egg retrieval part of the IVF.  There were some remnants of the cold hanging around the office when I returned.  It was bound to happen.  Also, this happened to me the exact same time last year during my second IUI, excitedly thinking it was an early pregnancy symptom, I was wrong.  SO I am not taking this cold as a sign of anything except for being a pain in the butt.

The night sweats.  It’s gross and I hate it.

The cats have been on my lap again (two nights in a row)…I have already written about this (Can your cat tell if you are pregnant before you do) and whether it could be an early pregnancy sign.  I think they can detect a change in something, whether it is pregnancy or just a change in your body temperature, I don’t know.  One thing I do know, they can’t tell if the pregnancy is going to stick around or not 😦

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Sushi sitting on my lap and tolerating Diesel laying next to her, it’s not a common sight

Having said all that, today I do feel a little nauseous and I couldn’t bare to eat my chicken sandwich.  So who knows?  May be I am pregnant!  I don’t know because I haven’t tested yet!!!  Yup, today I am 9DP5DT (9 Days Past 5 Day Transfer) and I haven’t pee-ed on a stick yet. I am impressed with myself! I’d like to thank a very lovely lady who I met at my local Resolve Support Group who is IVF cycling with me…she encouraged me not to do the test it out thing, and to wait it out with her!!  Last time around I tested 12DP3DT (i.e. what would be tomorrow, when my period would ordinarily be due).  But this time I am not testing until the evening before my Beta test (which is scheduled for Friday).

How do I feel today? You may have noticed my absence for the past week.  Well I took my ‘Must keep busy during the 2 week wait’ a little too literally!  Although I have been hampered a little bit as a result of work.  Last week I got home in the evenings with my brain frazzled – I wasn’t doing overly long hours, just lots of hard thinking and writing.  The thought of updating my blog was too much for my poor brain, so I did mindless (mindful) things such as knitting, TV watching and colouring in.  I even taught Chris how to knit 🙂

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My IVF knitting project 2/3 complete!

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Chris learning how to knit!

We also went away on a mini road trip/city break to Charlotte, North Carolina to see the Charlotte Hornets v Washington Wizards (Basketball).  My first NBA game, it was my birthday present from back in December.  I had a fantastic time, I really enjoyed the experience and appreciate the very talented athletes.  I think it might be my favourite American sport so far!  Along the road trip we visited some random places, like a Lemur conservation, the world’s biggest chest of drawers, and a mountain that was only 350ft tall (it was a slightly misleading name of a state park!!!!).  Planning a city break in this 2 week wait was perfect! (Except for the catching a cold part).

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Our first NBA game!

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The World’s Largest Chest of Drawers – It’s in a town called High Point in North Carolina!

Any results?  Not much longer to go now!

What’s next? Beta HcG test will be 4 days from now :-s

Weight. NSTR.

Waist. NSTR.

Boobs. So, so sore and sensitive!

*Notes.  I take First Response Reproductive Health multi vitamin gummies (pre-natal) and CoQ10 200mg gummies daily.  NSTR = Nothing Significant To Report.