HOW DO YOU GO ON?

I am part of a Facebook group of women who are going through infertility. Recently, someone wrote a post asking for advice on how to have the strength to go on after multiple failures. I wanted to respond, but didn't feel I had the right word s to share, but still really wanted to say something.

Last night, I attended an event organized by the Teaneck Yoetzet Initiative and one of the speakers really impacted me. The topic was not specifically about infertility, but many of her lessons resonated. I left the event CHARGED and MOTIVATED and wanted to share her thoughts with you in those hopes that they will help.

I need to give credit where credit is due. This amazing woman's name is Shera Dubitsky, MEd, MA  and she was charged with giving tools to "take care of your MIND." She works for Sharsheret, and helps those navigating diagnosis with ovarian and breast cancer, but  these tools are  applicable for the infertility community and others, as well.

Here are some of the points she made, and my commentary on how it can help the mindset of those navigating infertility.

1. The Three Little Pigs and The Big Bad Wolf: 

The Big Bad Wolf's refrain during this well-known children's tale is "little pigs, little pigs, let me in, or I'll huff and I'll puff and I'll blow your house in!" The pigs, as we know, don't let him in, and in fact, the wolf DOES blow their houses in. Now, what would happen if we let the big bad wolf in? Invite him in, offer him a drink or some cookies, let him put his feet up on your ottoman. Perhaps, by letting him in he doesn't come off as so scary.

When diagnosed with infertility, one must not hide scared in a house alone, or even with your husband, it is really helpful to face it head on. Invite the diagnosis in, learn what you can from other “little piggies” who may be afraid of the big bad wolf. Have a party and invite the wolf! If you face this fear head on and let others know, they can be there for you every step of the way.

If you want to face the "wolf" but are afraid to try, there are many small steps you can take to dip your toe in the pool.

Yesh Tikva (www.yeshtikva.org) is a wonderful resource to help you at whatever level you want to join this Jewish Fertility Community. If you want to learn about an infertility diagnosis, look no further than the "Insider's Guide" tab where you can read "What to expect." If you want to read how you are not alone, you can read other people's stories and gather strength from it. If you want to join a support group but don't know what to say? Call into the "Live with Dvora" support groups. You can just listen and don't have to speak until you are comfortable. If you want a buddy to be there every step of the way, Dr. Talia Hindin will find you the perfect "Fertility Friend' based on your needs and wants. And if you are really brave, tell others what you are going through so they can support you, and not inadvertently say hurtful things.

2. G.P.S - Recalculating Route

When you get in your car and put your destination in Google Maps or Waze or whatever method you like, sometimes you take a wrong turn and you hear "recalculating route." Don't let that stress you out, the navigational system will get you to where you need to go. It may not be the original way you thought you would get there, but you will reach the destination in another way,  and possibly a  little later than expected. And if you don't like the path you are being guided on going, you can get off at the next exit and try and navigate yourself.

Infertility is a tricky diagnosis. It is not black and white, not everyone reacts the same way to the same protocols and there are different ways to achieve your family. Whether through both parents biologically contributing, or using donor egg or sperm, or adopting, or choosing to live a child-free life. They are all roads one can take. How we get to the final destination of our choosing is not set in stone. We can always chose to take another route, and the journey only ends when we are comfortable with the results. You are in the driver's seat, not your parents, friends, or even doctors. Be your own best advocate because at the end of the day, you need to be ok with all you have done.

3. Cigarettes - Kick the Habit

We all know that smoking is bad for our health, so we don't do it. Also, avoiding someone who smokes is ideal so we don't inhale second hand smoke. Mrs. Dubitsky labeled  negative thinking "emotional cigarettes." When you are down and negative, it's like you are smoking emotional cigarettes. And the second hand smoke from that can harm those around you.

For example, you are taking hormones, they are making you tired, creating weight gain, making you snap at those around you.  You are not in a “happy place.” You know the reason internally, but perhaps mindfulness of the situation will help. You can talk about it with your loved ones, rather than building the smoke up in your lungs, and unloading the toxic smoke on those around you.

The path to parenthood is a frustrating one. The constant waiting and hoping and “what ifs” are a cyclical process since, if not successful, just repeats. If you are upset by a diagnosis, or a negative pregnancy test, try not to inhale all the bad because once you exhale, you will harm those around you who are just trying to be there for you. So try and be honest with your feelings and open up about them before they build up inside. Because when you exhale, you not only hurt yourself but those around you.

The speaker even gave a tip to help increase your awareness to prevent “emotional smoking.” Put a band-aid on your shoulder where a nicotine patch may be. When you look over or feel it, it will remind you to “kick the habit.”

4. The Monkey Bars at the Playground

Upon observing little kids on the playground, you can see that in order to move forward, you need to face your fears, and let go of the rung behind you. When  one hand is released, you have to gather your strength to  put your other hand forward.

Though it may be one of the most difficult things you do, in order to move forward you have to let go of the past, the failures and miscarriages, and even some falls you may have had and get back up again. I know it is easier said than done, as many of the pitfalls one experiences during infertility can be devastating. But the only way to move forward is to face your fear, get up, let  go of the rungs and press onward. Though it is hard to see it now, there is a light at the end of this tunnel. Each person gets there at a different time and in different ways. Something that I have learnt on this journey is whatever doesn't break you  makes you stronger.

And I have faith that you are strong.

Another Curveball

CMV: Cytomegalovirus


I navigated infertility, and thank God, after the many ups and downs, I now have 4 children. I still speak openly, to anyone who will listen, in the hopes that my story may help others on their fertility journeys.

I AM NOT A DOCTOR

I write that in bold because I do not dispense medical advice, I just thoroughly research topics  to make informed decisions for myself.

Lately 3 little letters have come up in conversation relating to pregnancy that I had some SCARY experience with. So I decided if someone wanted to google it, and not speak with me, that they could get some information that will help them out.

I CONTRACTED CMV FOR THE FIRST TIME IN MY LIFE WHILE I WAS PREGNANT.

Now, what’s important in that statement is twofold: I never had CMV before, and it was clear I got it for the first time while I was pregnant.

I know this is important because the three specialists that I saw commented that they had never seen such a clear cut case of CMV contracted during pregnancy.

So let’s backtrack a bit. I got pregnant with twins and then lost them at 10 and 11 weeks. I was devastated. I had a D&C to find out what caused this loss, and it turned out they each had different trisomies. From that point on my husband and I decided to do Preimplantation Genetic Diagnosis, PGD, (genetic testing of the embryos and to only transferring genetically “normal” embryos so I would not have to endure another loss for THIS reason).

Before my next retrieval I wanted to be sure I didn’t have any other issues so I requested a full workup from my RE (reproductive endocrinologist). These tests were performed January 2012 and I received the all clear. I went ahead with my retrievals: one in January, one in February and another in March. During the March retrieval they decided to transfer two fresh genetically normal embryos. One embryo implanted and after several weeks of monitoring we graduated from the RE to my regular OB.

At my first appointment with my OB, he did his regular prenatal blood panel. When the results came back he called me immediately.   Apparently, I had CMV and all my blood work from my RE showed that I had never had it before. CMV, if transferred to the baby from a mother who doesn’t have the antibodies in her system already (hence you never had it) could result in: blindness, deafness, mental retardation or stillbirth.

The earth stopped for me. I had already had a number of miscarriages, therefore we only transferred normal embryos this time and we still had a complication? WHY US??

So the researcher in me needed to find out all that I could. I went to high risk OB’s in Manhattan, CHOP in Philadelphia, and New Jersey.

The first thing I learned was there was a blood test called an AVIDITY test that could narrow the window to find out when I got the virus. For me, I knew from the January blood work that it happened sometime between February and April, so the AVIDITY test would not help me (but that ruled it out for others I spoke to after.)

The second thing I learned was that there was a SLIGHT chance it could be transferred, and IF it was transferred to the baby there was a smaller chance the baby would get sick, but I like dealing in “worse case scenarios” and having all the information.

So I decided I wanted a CVS, an invasive procedure where they take cells from the placenta for testing. This is done earlier in a pregnancy than an amnio. The results would not be definitive, but it was the earliest test I could do to either get good or bad news. The CVS came back that they didn’t see the virus. Not definitive, but good first hurdle.

The next step would be the amnio. The reason the amnio results are more definitive is because in children, they test the urine, and amniotic fluid is urine for a baby in utero. The amnio was what I was waiting for. In the meantime, I could not sit idly by and do nothing. So thank G-d, I had a great team of  doctors who found ONE STUDY in Italy that showed POSSIBLY by doing an IVIG infusion of CMV antibodies to the mom while pregnant, perhaps they would cross the placenta and give the antibodies to the baby. So in the two months before my amnio, I would do that.

My first infusion was a horrible experience, they had me do it with people undergoing chemo. The nurses asked me what kind of cancer I had and I cried. It took forever (6 hours) and I was hungry, depressed, worried and alone. After that infusion I called my OB who suggested next time we do it at the ANTEPARTUM LOFT with Labor and Delivery Nurses and not as depressing. That was a much better experience.  Still long, but not as sad.

It was finally time for my amnio, I knew this was a risk to the baby, but I needed to know. Thank G-d, the results came back fine. The baby never got the virus, and we were all clear.

My son was born healthy with a lot of tefillot around him.

When I was getting ready for his bris, I wanted to thank all those who davened for me during my pregnancy. I also wanted to thank Hashem since he was a true partner in this process. I wanted to quote the Gemara that mentions the three partners in making a baby and I was floored when I found it.

In Messechet Niddah, Daf Lamud , Amud Alef, it talks about what it takes to make a child. Our Rabbis taught: There are three partners in creating a child: Hashem, the father and the mother… We know from the Gemara Hashem’s role is 1/3 of the job, but I know that in our situation, his portion was more than that, to which we are thankful.

Now, what we didn’t say in the bris speech was more specifically what the Gemara says Hashem brings to the table in creating a child. The Gemara says “God provides the spirit, the soul, the beauty of the features, eyesight, the power of hearing, ability to speak and walk, understanding and intelligence“

When I read this I said to myself “OMG, those are the things that CMV effects!” So for me, Hashem listening to our prayers, of those who prayed for me and the tears and tefillot I cried out. It illuminated the importance of what Hashem’s role is in this area. And because of those constant reminders, I know Hashem took care of our son.

Chanukah: A Prayer For Miracles This Holiday

I remember the aftermath of my first miscarriage. Many times people don’t even realize they have had a miscarriage when it happens so early in the game, but since I was going through fertility treatments, in this case an IUI, I knew that I had conceived, I knew that it had implanted and the cells of the embryo were splitting… and then they weren’t.  When they say “your body takes care of it,” the pregnancy hormone or BetaHCG numbers, or “Betas” in the fertility lingo, slowly go down to zero. Well, my body wasn’t doing that, and so I had to have a shot of methotrexate to help me get there.

One of the warnings I got when taking methotrexate was to NOT TRY to conceive on my own for 3 months. Anyone who is trying to get pregnant through an A.R.T. knows that you are pretty much chained to a lab during that time, and I was being released from those chains. So what does one do when given freedom of movement but can’t actually physically do anything? Well, I went to better my soul. My husband and I went to Israel.

We spent Shabbat in the old city of Jerusalem and had a meal with the Rosh Yeshiva that my husband had studied with for his gap year. He asked me to sit next to him and I confessed to everything we were going through. He told us he wanted his son to take us to see a specific Rabbi for a bracha the next day.  On the 2 hour journey for our bracha, the son, our guide, turned to me and said “You likely will not get to see the rabbi, so tell me what you want to ask since my father feels your husband is quiet and would not push through the crowd for a blessing.”  My husband spent a year in this yeshiva, was nicknamed “pareve” since he was coming to learn, but not change. The head of the yeshiva knew my husband’s personality and accessed that his wife was a true ezer k’negdo and could speak, if allowed, for both, but wouldn’t have the opportunity. I was very grateful to have a representative who would not hold back. I told the Rabbi’s son that we had recently had a miscarriage and we wanted desperately to have children and I was losing hope. Should we switch to IVF or continue with IUI, will we have children… what should we do?

When my husband came out from seeing the Rabbi, I asked what had transpired. I wanted details. “He asked what I did for a living. I told him I make lights. He asked for your Hebrew name, and I told him Zehavi. I asked for a bracha for my livelihood and for children. He told me I will LIGHT UP THE WORLD.”

That’s it?  I was disappointed. Will we light up the world through his work? Would my “golden” Hebrew name allow me to light up the world another way? Will we finally be able to see the light at the end of our dark fertility tunnel and have children? How will we light up the world? In hindsight, it would be all of those paths and only now can I see it revealed, and I truly thank G-d.

Chanukah is a festival of lights, a time for miracles, and every year at this time, I think back to this event in my life and the bracha that we would “light up the world.” I know how lucky I am that Hashem gave me my miracles! I still cry in disbelief and nachas during candle lighting when I hear my boys recite the brachot. But I don’t forget the past.

I speak openly about my journey, tell my tale on blogs, youtube videos, symposiums, wherever people will listen. People I have never met come over to me, call me, email me to share what they are going through and just knowing there is someone else they can talk to brings light into their eyes.

I reflect on those who have to endure this holiday without children. I relate to the couples who are praying that this is an auspicious time for their cycles and perhaps Hashem will give them a Chanukah present, a miracle this time, that he will bring light into their dark days, and I pray too.

Whoever you are, where ever you are, know that you are not alone. You may not know me, and I may not know you, but I feel you – your pain, your heartbreak, your despair, your doubts, and your fear. There will be miracles for you, it may not be clear how it will manifest itself, but Hashem has not abandoned you. With each day of Chanukah, may the increasing lights and warmth of the candles on the menorah bring you comfort and I hope that your gift will be revealed sooner rather than later. 

Silent Sister No More

I got a call the other day from my sister-in-law.

She had seen my blog and had asked me what my aim was in creating it.

I told her that I wanted people experiencing infertility not to feel lonely, that someone else out there thinking what they were thinking, experiencing the same shots, mood swings, weight gain, also understanding the doubt they felt, sometimes hopelessness and futility, and even sharing funny anecdotes about infertility situations to add a little humor to this arena since G-d knows we could use a break from the seriousness of our cycles.

I wanted them to know me, and that I was them.

She said, "Then why do you hide behind the name ‘Silent Sister No More’ if you don't tell them who you are?"

She was right.

 If I want to be a resource for people who may be ashamed to comment on my blog, to be able to reach out to me if they need to, I need to be "out there."

So here I am.

My name is Elie, and I am silent no more.

You can reach me at esalomon@yeshtikva.org

Don't Judge a Book By Its Facebook Profile

Facebook is a funny thing. You see the best in people: their photos, status updates of awards or vacations.  Rarely does someone talk about struggles, depression or suffering a loss (unless, G-d forbid, they have lost a parent and want people to know funeral or shiva information.) Almost a year ago, I did the most taboo thing possible, and shared a video of me talking about my struggles with infertility, and the reaction was more than I expected...

I spoke locally to a group of women in my community about what it means to go through infertility treatments. The waking up at 5am to be the first in line for blood and ultrasound checks in order to get to work on time with no one being the wiser. The dreaded "2ww" (two week wait) to find out if your procedure worked and if you were pregnant. Holding your breath to make there was a heartbeat.  Trying not to look at the sonogram while they checked the NT scan. Suffering alone when you had a miscarriage so early on that people didn't even know you were pregnant. All these things that some people may not realize when they get pregnant on their wedding nights. 

Some women were moved to the point that they told their husbands "I wish you could have heard what she said." I think I got 5 emails asking if I would publish my speech. I thought about it, and the words in black and white are not the same as hearing the lighthearted jokes, the crack in my voice, and the tears in my eyes. So I asked a friend to join me in the kitchen and I re-read my speech. Just me, at the table, with the speech before me. And then I did the unthinkable: I posted it on youtube and linked it to facebook. At first, I put restrictions on it: if you don't have the link, you can't see it. You cannot just "search" for it, you had to have an "in." 

80 people liked it
6 people shared it.
41 people commented.

Many of the comments were similar:
So brave of you to share
You are an inspiration

Some came from inside knowledge and appreciation:
Thank you so much for sharing, you couldn't have said it better or more detailed. now people can get a glimpse of the total mental and emotional roller coaster people with fertility issues go through. may you have strength to always do good and be a source of help for others.

But one struck me like no other. It was from a former classmate of mine from elementary and high school with who lived in Israel now. We have not spoken in 20 years, but we are "friends on facebook."
Great video, and a treat to see you. Funny, I never would have guessed you were struggling with infertility given how you banged out those 4! Just goes to show you, don't judge a book by it's FB profile. Kol hakavod and lots of nachas from your little ones.

That was exactly the point! Sometimes people feel alone and upset when seeing others pictures on facebook. Weddings, kids' first day of school, the "I am 7 months old" pictures. Like my grandmother used to say, "everyone has their peckel" and infertility was mine.

After that comment, I decided, if I am public about it on facebook, why not let the entire world see it? Who am I hiding from? 

I went back to youtube and removed the privacy settings. My video has been "out there" for about 8 months now, and because of that one comment, 1,143 people have viewed and hopefully gained strength or knowledge from my story. 

I am a silent sister no more, and hopefully others will speak out and educate the masses as well.

MY FIRST PREGNANCY - A LESSON IN MANAGING EXPECTATIONS

I had gotten married "late" at age 31 and assumed since it took a while to find my bashert that having children would come when we wanted it. When it didn't come easily I immediately went for help.

After three failed "natural cycle IUIs" and two failed "hormone assisted" ones, I finally got a positive "Beta*" back. I was thrilled - YAY! Pregnant! They told me to come back in 2 days for a repeat. I came back and sat triumphantly in the phlebotomist's chair while they took my blood. My nurse called hours later and took my high down a notch. 

"The numbers are supposed to double, yours still rose, but not double. Come back tomorrow, sometimes it takes a little more than 48 hours."

Still with hope, but more guarded, I pulled up my sleeve to reveal the "good vein" for blood draw. I gave my sample and I waited. The call came hours later, and the number rose by 3, the pregnancy was ending. 

I had to come back the following week to make sure the number was headed to zero. So I did, and the number had risen a little. I asked "Does that mean the baby is fine since the number is now rising again?" No, it meant a special call from the doctor.

The doctor told me he was advising I come to get a shot of methotrexate. I had never heard of this before, but it alarmed my father. "Isn't that a drug they use for CHEMOTHERAPY?" So I called the doctor back, he said that cancer grows like cells do in making babies in that it is the splitting of cells. This is a LOW DOSE and would wipe out the pregnancy, or what was left of it. My special instructions were to refrain from sex (or use a condom) for two months until the drug got out of my system. A pregnancy with this drug present in the body could be dangerous for a baby.

It was my third hormone assisted IUI which failed, so I asked if we were moving on to IVF. The doctor said "No, it worked, you got pregnant, but it didn't stay. So we know you CAN get pregnant through IUI, so we wont jump to IVF yet."

Dejected, my husband tried to get my mind out of failure. He suggested we take a trip since we wouldn't have to plan our lives around early morning monitoring or shots. I needed a spiritual uplifting, so we decided on Israel. Eilat for our physical vacation, and visiting holy sites to help heal our spirits. 

No one knew about this loss since it was so early on, but it had a huge impact on me. It taught me a valuable lesson in my managing expectations in ARTs. A positive "Beta" meant nothing. In order not to get emotionally hurt again, we would not get excited until our numbers would double, then we would be able to breathe. 

Little did I know that level of expectation would change again as we continued down the road towards parenthood.








*"Beta" is the term used for blood test that measures your BetaHCG levels. Also known as Blood Pregnancy Test.

SURVIVOR'S GUILT

Last year, I was sitting in the Maternal Fetal Medicine department of my local hospital waiting for my 20 week ultrasound. I was very stressed. Many of my pregnancies didn't go well, and this was an important hurdle to tackle.

I was filling out the questionnaire when something hit me...

How many pregnancies have you had? __6_

How many live births have you had? _2__

How many women see these questions and answer them with ease, whereas I am counting on my fingers: my IUI miscarriage that had to be resolved with methotrexate - a strong drug that made me wait 2 months before trying again , my IVF with the chemical pregnancy, my miscarriage of the twins, you get the idea...

I wanted to do something for others who were in this lonely boat to let them know they are not alone. I was thinking about what point in the cycle made me feel most alone, and it hit me -

THE MIKVEH

The mikveh was the time when it was obvious to me that my body had failed me. I heard a Rebbetzin mention that the Gemarah in Ketuboth describes the "impurity of niddah" as a "whisper of death."

EXACTLY! A new life was in arms length for us, but a miscarriage so early on, or a failed ART cycle was just a whisper. No one knew how close I was, and its hard for others to understand the grief of something that was barely alive. The mikveh would be the place to publicize a support group for women.

I jumped through bureaucratic hoops in my little town to get "small pretty signs" up in the mikveh. And then I waited...

Would anyone email?

Would anyone call?

I imagined in my mind that my couches would be taken up by 10 women from my town who I may not know who just wanted to vent. Could it be that I was the only one?

Then I got a phone call "I saw your sign in the mikveh, but I don't want to meet in a group setting. Would it be ok if we just spoke on the phone?"

Sure! Anything to help someone out. We spoke on the phone for two hours. When we hung up I realized that it was a bracha she only wanted to speak on the phone. You see, there was one thing I failed to mention and left out of my story on purpose - that I already had two children through successful ART.

YES, I want to help, but I don't want someone to feel badly that here I was, mother of two, and in my 20th week of pregnancy with twins, meeting or speaking to someone about trying time and time again to have a child.

I got a call from someone else who wanted to meet in person. I got really nervous. I didn't want it to be one-on-one, so I called two of my friends whom I knew were seeing the same doctor I was. We planned to meet at my house. I picked out my BAGGIEST SHIRT, my friend who was also pregnant with twins came early to hide under a blanket. My other friend also failed to mention that she already had one child. We all felt we wanted to be there for others, but wanted to hide that we weren't presently in the same boat. Why did we feel guilty?

I had put my name out there as "THE FACE OF INFERTILITY" in my community, but I wanted to hide my expanding belly. Being in this sisterhood of infertility, I developed a GUILT that I had overcome infertility, not once, but twice, and was about to do it again.

Recently, at a YESH TIKVA (www.yeshtikva.org) event I was attending, I was able to get some peace of mind. The event had three professionals speaking about "Caring for Your Mind and Body Through Infertility." It was extremely informative, but the best part of the event was the mingling before and after.

I was speaking with someone who was going through the journey and when they asked "Where are you in the process?" (a typical question in such circles) I paused. I said "I have done IUIs, IVF, IVF with PGD and FETs." I was being vague because I felt guilty. Then they pressed me "Did any work?" With my head down, I replied, "I have 4 children, my first through IUI, my second through FRESH IVF with PGD and my twins through FET with PGD." They said "That's great, we are about to do IVF for the first time, what is PGD? What can you tell us, any advice?" I told them I felt guilty mentioning my success in this forum. They said, "You shouldn't feel guilty, you are giving us hope!"

HOPE... that's all I ever wanted to give. Hope and support.

I know that some people feel that once you have one kid you are no longer part of the sisterhood, but I am glad to know that there are some people out there who want to hear from people like me, so I am in the process of overcoming my survivors guilt. Thank you fellow fertility travelers from the YT event, you have no idea how you’ve helped me.