Sacrifices

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“What would you be willing to do for your children’s life?” I’m sure any loving parent won’t hesitate to answer “anything”.

Yet very few will ever need to act on those words. Very few will know the true meaning of sacrifice. Most take it for granted. They expect sacrifices to be as easy as it is to pronounce them.

Even though others may not easily recognise any significant sacrifices from my part, in this pursuit of a healthy pregnancy that can give me a living child, I’m constantly making small concessions and lifestyle changes that feel more and more like tiny sacrifices each time. They seem small. They seem insignificant. They seem easy. But they add up.

I’ve attempted to reduce the use of toxic products in my home. This encompasses replacing from traditional cleaning products to all plastic kitchen items and non-sticky pans, as well as substituting all hygiene and makeup products by natural alternatives. We’re also doing our best in buying only organic, free range produce, eating strictly gluten free, low carb and almost no dairy or sugar. And I haven’t drank more then the (very) occasional glass of wine for several years now.

I’ve also started meditating regularly, seeing a therapist, doing weekly acupuncture sessions and, since the last miscarriage, running a few times every week. And the supplements, so many supplements…

To any loving mother that’s really a very small price to pay for the health of their children.

My ‘fertile’ friends don’t think twice before stating they would do all this and more if they’re in my shoes. ‘Anything’ to guarantee a good outcome. Such words come easily out of their mouths when they are not the ones needing to do any of it. When they fall and stay pregnant as effortlessly as they make these assumptions.

Ironically though, they complain about how excruciatingly difficult it is to go through 9 full months without drinking. And potentially up to 15 months, if breastfeeding. I heard so many complains I’m sure it’s a struggle for them.

But I’m never allowed to struggle or complain. No, that’s not what’s expected from a loving mother. A loving mother will go to great lengths to ensure her children’s health without uttering one little word of discomfort.

All while watching the same friends stuff themselves with delicious cakes and snacks. Because, well, they would surely do what is needed if they were in my shoes. Only they are not.

Often their supportive words feel instead like judgement. If I truly am as loving, caring and selfless as a mother ought to be, I’ll do all this and more. And then I’ll finally get a child, because I’ll deserve it. So it’s not much a matter of sacrifice as it is one of bargaining. What else do I need to do to prove I am deserving enough? And who gets to decide that?

Even though I’m clearly ranting, these small lifestyle changes don’t bother me for the most of time. I chose to do all this in an attempt to care for myself and my health. Most of the days I don’t mind or actually enjoy these choices. I wouldn’t go back to all the chemicals and sugary food anymore either way. These are not true sacrifices.

Every new treatment and drug I try I worry about long term effects on my own health. I take this seriously and consider the potential side effects now and for years to come. Surely stimulating one’s ovaries to mature dozens of eggs instead of the usual lone one can’t be without consequences. Having our embryo grow outside the womb and stay frozen for years can’t be without some effect. Taking all these immune modulating drugs to force my body into another state can’t be ‘for free’.

Although I realize this, I’m not overly worried about it as enough studies shows the risks are low. All we can do is hope we fall on the good side of the odds (for a change).

The sacrifices that keep me up in the night are these: how much of my sanity is being compromised by this pursuit? How much is my marriage suffering? Our financial stability? My career? All the things that used to make me, me?

If I continue to slowly sacrifice small pieces of myself, my soul, who will be there, on the other side, when this is finally over? Will I recognize myself? Will I recognize my marriage? Will it really be all worth it? For how long can I keep this up before there’s nothing left to sacrifice?

Certainly a nerve struck when, some weeks ago, my GP told me I should give up and look into adoption before my whole life is destroyed by an unachievable dream.

Again, easy words to speak when one has pictures of 3 beautiful healthy children by the window.

She came to this unwelcomed ‘advice’ when I was asking her for help and support during my new immune treatment and FET. Not only did she refuse to help, but she thought I was dangerously risking my health. Though she admitted not being an expert on the matter, that being the very reason she refused to help.

Most of the doctors I’ve encountered who are against immune treatments will use the same argument: I’m endangering my health. It’s much safer to just try again, they say. I might get lucky, eventually.

Such advice always makes me wonder why they are so protective of my life but not of my unborn children. Assuming their lives could be saved by these drugs, asking me to try again without any medication or treatment isn’t the same as asking me to sacrifice their lives? Why are they so reticent to sacrificing my life but not theirs? Are their lives worthless or less valuable than mine?

And why should I sacrifice them for myself? Isn’t a mother supposed to put her children first?

Had I a terminally ill young son or daughter fighting for his/her life in a hospital, no one would question me for sacrificing whatever is necessary to save her/him. Not my marriage. Not my career. Not my own mental health. Certainly not my finances.

How is that different from fighting for the life of my unborn children?

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What is wrong with me

“What is wrong with me?” I must have asked myself this question thousands of times. Especially in the last few years.

I asked “what is wrong with me” when we started trying and month after month I wouldn’t get pregnant.

I asked “what is wrong with me” when I finally got a positive pregnancy test, but had been bleeding on and off for a week, in what turned out to be an ectopic pregnancy.

I asked “what is wrong with me” when I got pregnant the second time and couldn’t blissfully enjoy the pregnancy, as I was still hurting from the first loss, only a few months prior.

I asked “what is wrong with me” when the doctors confirmed our second baby was not developing and had died in my womb.

I asked “what is wrong with me” when my body wouldn’t even miscarry naturally, always requiring medical intervention.

I asked “what is wrong with me” when we saw the little heart of our third baby beating in the ultrasound screen and I still couldn’t believe I would be taking this baby home, alive.

I asked “what is wrong with me” when I couldn’t bounce quickly back after yet another loss, as it seemed to be expected from me.

I asked “what is wrong with me” when during my first IVF egg retrieval the doctor uttered in disbelief that I had spontaneously ovulated and so she could only retrieve one egg.

I asked “what is wrong with me” when I couldn’t genuinely feel happiness for all my friends’ and sibling’s pregnancies, as my sadness and jealousy got mixed in.

I asked “what is wrong with me” when I watched one after another, pregnancy tests not showing the expected progression, indicating our 4th baby wouldn’t be coming home either.

After that fourth loss, having been through 2 IVF fresh cycles, one emergency laparoscopy, one dilation and evacuation surgery, loosing one of my tubes and countless examinations and procedures, I needed an answer. I couldn’t bear hearing “just bad luck” anymore. I needed to know exactly what was wrong with me, why my body couldn’t sustain a pregnancy. And I would spare no effort to get an answer.

I took matters into my own hands and even ordered some genetic tests online by myself. I visited several specialists on different countries. I finally paid a large sum of money to one of the world’s leading experts in this field, simply to find out “what is wrong with me”.

And I waited. I patiently waited months on end, while trying to make any lifestyle changes that could help.

As the day for receiving my most anticipated test results approached, a huge wave of anxiety settled in. What if there’s nothing wrong? What if it’s just bad luck? Am I overreacting? Am I wasting time and money and putting myself and my husband through all of this for nothing? Just to satisfy my childish desire for control?

I now really wanted there to be something wrong with me. Anything. Not only so I could focus on fixing the problem, but also so it wouldn’t have been all for nothing.

When our appointment time finally came, I was ready. Dr. Braverman jumped right in and listed all his findings. There are quite a few things wrong with me, as it turned out, but he had a plan. A plan that involved several drugs and surgery, but could give us about 80% chance of conceiving and carrying to term.

After the appointment I felt immense relief. There were reasons. There were possible treatments. I was ecstatic with the news, if only a bit worried about our next steps. And so we left to my (Zika infested) home country for two weeks of vacation. I just needed to let the news sink in before we could make a decision of how to move forward.

Coming back home, I couldn’t let all the information from the appointment in the back of my mind anymore. It started to overwhelm me. All of it: the diagnosis, the prognosis, the suggested treatment, the financial strain required. It all seemed like too much to bear.

The initial excitement was now fully converted to worry and doubt. Is all this really necessary? What consequences all these drugs will have on myself and my baby? Why should I trust this doctor more than all the others that told me I should just try again? Why would him be right and not the others? Just because he fed my desire for an answer? And what answer is that, anyway? It’s not a one-line diagnosis. It’s a collection of little things here and there, which may or may not be contributing to my losses. And his treatment suggestion started to feel less like my much desired tailored protocol and a lot more like a from-the-shelf solution offered to everyone.

In the world of reproductive immunology there’s no shortage of antagonistic opinions and disagreements. No treatment or diagnosis is easy and straight forward. There is too much doctors and researches are still trying to comprehend, so it’s easy to feel like a lab rat.

Yet, we still needed to make a decision. One that was right for us, our individual situation. Although it took a lot of talks, a few arguments and many tears, we reached a decision that we were comfortable with.

So here’s our current plan: we are going to waive surgery for now and try a FET (frozen embryo transfer) while following the reproductive immunology treatment protocol. And hopefully it will happen next month (August).

HDR photograph of an abandoned dock set afire by intense sunset color

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For those who would like to know all the nitty-gritty details of what seems to be wrong with me, here’s the list (Disclaimer: I’m not a doctor nor an expert, I’m simply stating my personal understanding on these complicated issues):

  • Endometriosis. Braverman was very adamant about this and expects it to play a very large role in my case. That’s why he was strongly advising excision surgery before any further treatment. This was also one of my major doubt points. Even though I’m quite certain I probably do have endometriosis (only surgery can diagnose it for sure), as I have several symptoms and family history besides Braverman’s findings, I was not convinced it’s causing so much damage at this point. We did succeed in achieving 7 high grade blastocysts out of 10 eggs in our second IVF attempt, which is a quite good result. Our decision has then been to postpone surgery for now and give it one try with only the medications first. My endometriosis symptoms are not affecting my life too much at this point and if I can avoid another surgery it’s for the better. It also give us time to research our options regarding surgeons and costs. Braverman advised us to perform the surgery in his clinic, with his trusted surgeon, but as we would have to pay out of pocket for all expenses, this seems unlikely at this point. We are looking into other options within Europe.
  • HLA matches. My husband and I seem to share several HLA genotypes. This makes it harder for my immune system to recognise the pregnancy as such (instead of a threat) and put the protection mechanisms into play.
  • HLA-G mutation. I have a gene mutation which has been associated with a decreased capacity for the immune system to recognise pathogens (such as virus, bacteria, etc). It has also been associated with recurrent miscarriages. It seems the same mechanisms into play when identifying pathogens are used for recognition of the embryo. This made me wonder if this mutation could explain why I’ve been so sick so often during my childhood and teen years.
  • Several autoimmune markers. I have several genetic markers associated with autoimmune diseases, some of which I have already developed (psoriasis, asthma, Hashimoto’s/ Grave’s disease), some I may or may not develop in the future (Crohn’s disease, psoriatic arthritis, among others). This relate to pregnancy loss because, in simplistic terms, shows that my immune system is not great in differentiating between self and non-self tissue (thus the attacks on self-tissue, which characterises autoimmune disorders), which is an essential part to the process of recognising the developing embryo and activating the protection mechanisms.
  • Natural killer cells and cytokines. This part is very confusing. Some doctors believe NK cells can attack an embryo and thus are only interested in elevated levels of these. Braverman does not share this belief. He says there has been no scientific study to date showing such attack happening. However, he believes that unbalances on these cells and on certain cytokines (chemicals released by the immune cells by which they “communicate”) can be used to understand the actual state of a person’s immune system, giving “clues” regarding faulty mechanisms. In my case, I have several that are too low, several that are too high and some there are within normal ranges. He says it’s compatible with endometriosis, psoriasis and asthma.
  • Highly elevated anti-paternal HLA antibodies. My immune system seems always so slow and weak when reacting to infections, but it’s all too eager to develop antibodies against my husband’s cell tissue. This is quite important as Braverman believes these antibodies can effectively attack the developing embryo and placenta. However, even though I have very high levels of these antibodies, so far they don’t seem to be attacking (not complement-fixing, in the technical term), but Braverman is concerned they could switch into attack mode during pregnancy.
  • MTHFR mutation. I’m heterozygous compound (have one – out of two – allele for each mutation). This has been associated with increased risk for recurrent miscarriages. I already knew this from my own research and have been using methylated folate and methylated complex-B vitamins since October last year.
  • Elevated anti-thyroglobulin antibodies. This was seen before, during my last pregnancy, but never while not pregnant, until now. It seems I’m developing an autoimmune disease against my thyroid. It’s hard to say if it’s Hashimoto’s or Grave’s at this point, and my TSH is within normal ranges for now, but on the lower side. I’m not sure what to do regarding this besides keeping an eye on it. My body is able to counteract the attack so far and produce enough hormones.

These were the major findings. It’s not all bad news though, so for the record I’d also like to list some of the things that are not wrong with me:

  • No KIR genes
  • No APAs (and this time all 21 were tested)
  • No ANAs
  • No TH1/TH2 unbalance
  • No thrombophilia mutations besides MTHFR
  • Normal levels of homocysteine, vitamin D, proteins C and S

As we’ve decided not to have surgery for now, my reproductive immunology treatment protocol will consist of the following drugs:

  • Intralips infusions every 2 weeks from cycle day 1. This is meant to help regulate my immune system. Each infusion takes 2 to 3 hours and I may need to continue them throughout the pregnancy. I’m currently looking into my options regarding getting this treatment where we live, otherwise I’ll need to travel abroad every 2 weeks (which is far from ideal, but I’ll make it work if need be).
  • Low-molecular-weight heparin (Lovenox / Clexane) injections daily from ovulation. This is a type of anticoagulant. It’s meant to help with blood flow to the developing embryo. Mainly due to my MTHFR mutations.
  • Prednisone every day from ovulation. This is a corticosteroid, used to suppress the immune system. I was quite concerned about using this, as it can cause several unpleasant side effects and if used for long (over two weeks) can cause the adrenal gland to shut down, which can be very hard to recover from. Not to mention suppressing my already weak immune system, possibly leading to basically getting every bug out there. However, I’ll be on a low dose and when I realised this is in fact the same medicine I’ve used countless times before against strong allergic reactions, I was much more comfortable, as I know I don’t react very badly to it (though I’ve never been on it for longer than two weeks, I think).
  • Filgrastim (Neupogen) injections daily from ovulation. This is suppose to help with my HLA issues (matches, mutation and anti-paternal antibodies). It essentially forces the body to produce more of a certain type of immune cell, neutrophils.

Other recommendation from Braverman are to remain on a gluten-free diet (I’ve been on it for several months now), take methylated folate (also been on it for many months), take some specific supplements to help with the endometriosis (I’ve started on his Endo-optimize supplement and probiotics) and supplement with calcium while on prednisone. I’ll also be regularly monitored while on these drugs and need to rerun the immune tests after the beta result (no matter if it’s negative or positive).

The FET protocol itself will be a natural cycle FET. This means, there will be no hormonal replacement during the first part of the cycle. They will simply monitor my follicle with ultrasound scans until it’s big enough, then I’ll take a HCG trigger shot to force ovulation and the transfer will be scheduled to 4 days after that. I’ll supplement with progesterone gel after the transfer. This is the standard protocol on the (publicly funded) clinic we attend and they don’t steer away from their standards. It’s take it or leave it.

We’re taking it and hoping for the best possible outcome.

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These last months I’ve also been asking myself “what is wrong with me” in the context of blogging. So much has happened, there was so much I wanted to write about, but just couldn’t. Maybe I needed time to process my feelings. Maybe I needed some distance. Maybe I started to feel left out as seemly everyone I follow is either pregnant or parenting. So I’m sorry I haven’t posted in a while and I’m really sorry if I wasn’t commenting as much. But I’d really like to say how happy I am for everyone that is finally seeing their dream come true, and I wish you all nothing but the best, as you all deserve it so much!

Ups and downs

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These last few days have been full of ups and downs, not unusual for an infertile or recurrent miscarrier.

Down: A colleague from work, the one who forced me to tell my story because she wanted information on IVF, is visibly pregnant, probably 20+ weeks. She never told me about her pregnancy. She never said ‘I’m sorry’ for my last loss either – or any loss for that matter. Last week she found out the sex of the baby, so she brought a cake to work to celebrate. And she didn’t invite me. I’m guessing (from how far along she is) she never needed IVF after all. I finally realised she wasn’t going to say anything, so I walked up to her and said ‘Congratulations!’ with a big (half-fake) smile. She still didn’t acknowledge anything, nor did she ask me how I was doing. Too busy enjoying her pregnancy, I suppose.

Down: Another colleague opened up to me about recently finding out that the baby his wife is carrying has been diagnosed with Down syndrome. He doesn’t know about our struggles with infertility and RPL. I tried to be supportive and caring – and non-judgemental – in this difficult time for him. However, when he was sharing that he wanted to convince his wife to abort the baby (which is legal here in this circumstance) and she refused, he said something that felt like a sharp knife going into my stomach: ‘She can’t do it at this point in pregnancy (20 something weeks); it would feel to her as if she’s killing someone, like killing you or I, because she can now feel the baby’s movements. Now, the baby is its own person. It would be different if it was earlier in the pregnancy’. I froze at that moment, my thoughts going straight to ‘what about my babies? Does that mean they’re nothing? My babies don’t matter?’. I didn’t say anything, though.

Down: Due to some bureaucratic misunderstanding regarding our referral to the RPL specialist, I received a letter from the hospital in which our fertility clinic is located, saying I had voluntarily moved away from their clinic and switched to the new RPL clinic. This is incorrect, as I still plan on doing the FET on this fertility clinic (they have our embryos and it’s much closer to us). I was worried we would loose our public funding for the FET altogether, so called the hospital to clarify. After being passed around to different departments, repeating my story again and again, I talked to the secretary at our fertility clinic. She was extremely rude, saying (again) they will not support my treatment with the RPL specialist; but at least she confirmed I’m still registered as their patient and can have the FET any time I choose to. I had to made these phone calls at work, due to the opening hours, and after it I was having a mini meltdown and couldn’t stay at work, so I left early saying I wasn’t feeling well. I really think their attitude is unacceptable. Infertility and recurrent miscarriages are recognised by the government as chronic diseases. The offered treatments and clinics I’m attending are publicly run. Why should I feel like I need to beg and fight to have access to it?

Up: After some exhausting days, I really needed to relax and have some fun. Some friends from work came over and we had a girls night, just talking, eating cake and drinking coffee. It was wonderful. They are very supportive. We also vented our frustrations about work and laughed a lot. I need nights like that more often.

Up: Thursday was my husband’s birthday! We went out in the evening, after work, had a great dinner and watched ‘The Revenant’ in the cinema. It was wonderful. Food was great, movie was great and we didn’t talk about infertility. We always enjoy ourselves when we go out on a date night.

Down and Up: Friday I went to the hospital to do the Aspirin allergy test. I was really scared I was going into anaphylactic shock again, since I’ve had it twice when I was a kid, both times from Aspirin. How would you feel if you doctor offered to give you the same substance you almost died from twice before? I was freaking out. I barely slept the night before, thinking I shouldn’t have had those 2 glasses of wine during dinner (it was hubby’s birthday, though!). Before starting the test, they took my blood pressure and it was too high. They said if I don’t calm down and my blood pressure decreases, they couldn’t proceed. I wanted to do this, so I can have more painkiller and anaesthesia options. I kept thinking if I need to go through another miscarriage I want better drugs to manage the pain (I don’t react well to opioids as they make me sick, so I end up preferring the pain then throwing up all the time). And baby Aspirin is often used to treat RPL. I tried my best to control my nerves and was able to complete the test. It took about 6 hours in total. I had no reaction whatsoever. The doctor said they don’t know why. Maybe I reacted to some other substances in the pill, not the Aspirin itself, when I was younger. Or maybe I just grew out of it. I’m now allowed to take anything, but I think I’ll still be afraid for the first couple of times. If only I had done this test earlier, I wouldn’t have gone through 20 years of drug-free painful periods, muscular pains and headaches. Well, better late than never.

Up and down: Sunday we celebrated my husband’s birthday with some friends at our place. It was just an afternoon tea with hot-dogs and brownies, but it was so nice spending time with friends, talking and playing board games. I was a bit nervous about it, as I hadn’t seen my pregnant friend in over a month. I just have a hard time being around her due to her pregnancy being so close to my last pregnancy. We talk a lot on the phone and text each other, but when her huge belly is staring at my face it’s much harder for me. She’s quite nice about it most of the time, I think she understands it’s not easy for me, even though we never really talked about how it makes me feel. Her husband, on the other hand, is much less caring. He often times says or do things that are hurtful to me without noticing. This time was no different. At some point, my friend and I were sitting side by side just talking normally, when he came over and started rubbing her belly. Somehow, I never see him rubbing or kissing her belly unless she’s sitting right besides me. Then he does it all the time. I’m sure it’s not on purpose, but can’t he really see how uncomfortable it makes me? Well, my friend feels uncomfortable too, so she removes his hand and tries to gently push him away. And he starts a small fight, saying: ‘Why are you pushing me away? It’s my baby too, I can touch it whenever I feel like it.’ What else can I do in these cases but to get up and walk away? Why can’t even my closest friends, who have watched me go through all of it, understand how difficult it is, how their small actions affect me? I wish they didn’t, I wish I could touch her belly and feel excited too. But it’s impossible for me to not feel sad for what could, should, would have been.

I hope the days to come are filled with more ups than downs.

New plans, new hopes, new worries

Since the somewhat disappointing lecture by the local RPL specialist, I was left feeling this path wouldn’t lead me to the answers and results I was looking for. Of course, I’m rational enough to admit that it’s way too early to say if this doctor can help me or not, and these feelings are probably resulting from my general distrust in doctors (caused by recent repeated bad experiences). 

Wouldn’t it all be much easier if I just let go and trust that this doctor has my best interest at heart and he’ll do everything possible to help me? Yes, certainly. Unfortunately, I’ve been through enough to know I must advocate for myself; or maybe I’m just a cynic distrusting person that adds unnecessary angst to my own life. Take your pick.

After feeling miserable for some days, I decided to pursue other options. I’m going to my home country to see another reproductive immunologist (RI) for a second opinion. Yes, it’s crazy to go after a second opinion before even hearing the first opinion, but I just can’t sit on my hands, watching time pass by, hoping for the best, any longer.

Originally, our plan was to visit my family in late May. My father is turning 70 and my mom is organising a huge party. We thought of staying for a couple of weeks and seeing the RI in this time. He offers lymphocyte immune therapy (LIT), which seems to not be available here, and I was hoping I could get at least one dose during those weeks. 

I contacted the doctor before booking my flight, as I wanted to make sure we would stay there for enough time to allow tests and possibly this treatment (if at all necessary). They explained that I could do the tests and have the results in one week, however the LIT treatment usually consists of 3 doses taken 3 weeks apart. Since the “medicine” is essentially my husband’s filtered blood plasma, this meant we both would have to stay for a minimum of 7 or 8 weeks. We obviously don’t have enough vacation days for that. Again, the helpless feeling was taking over. 

I thought about it. Staying away for a couple of months started to look plausible. We would be staying at my parents’, so virtually expenses free, and we have enough savings that taking a 2 months non-paid leave at work wouldn’t be so strenuous financially. As long as we can arrange everything with our bosses in good time, it’s probably not a big issue. If that’s what it takes for us to achieve a healthy pregnancy, it’s certainly a small price, all considered.

Moreover, several weeks of stress free ‘vacation’ might even help me. Turning it around and taking this time to relax and maybe even travel a little with my husband just before we embark on the trying-for-a-baby train once more, might just be what I need. Or at least that’s what my counsellor keeps telling me.

A few days after the new clinic’s info meeting, I had a session with my therapist. Seeing how unwell I was, she again suggested I take a short leave of absence from work in the basis of stress. She’s been trying to convince me for a year now and I keep refusing it. I know how stupid it sounds that I’m literally paying her for her expert advice but refusing to follow it. 

I don’t know why I can’t let go. I tell her it’s because being off work would only be a short term relief and as soon as I would come back, the stress would come back; unless a long-term solution for my problem (a healthy pregnancy or a decision to stop trying) presents itself in the meantime, which is very unlikely in the next few months, as we won’t probably have our FET until June. She tells me, you admit it will help you now and that’s what you should focus on, how you can get better now. We will see how it goes after it when we get there. She’s right, but not convincing enough. It sounds like palliative relief and not a solution.

Another reason for my refusal is fear of failure. Or admitting failure. I already have enough feelings of failure, thanks to RPL and infertility: failing my babies, my husband, my friends and family, etc. My job is, in a way, the only aspect of my life not (completely) falling apart; the only part I can feel (or pretend) to be my old self, before all of this. It’s hard giving that up. Even though, in all honesty, it’s nothing like 3 years ago. My relationships at work are everyday more strained, my motivation is low and although my performance is still remarkably high (or so my boss keeps telling me), it has significantly decreased (or so I notice). 

Well, being ‘forced‘ to stay at my home country for 2 months for medical treatment would allow me to stay away from work for some time guilt free. I might be addressing two issues with one blow.

With this new perspective in mind, we decided it’d be OK to stay so long, but we need some time to prepare for it. So we booked a consultation and our flight to Easter week. We’ll run all the tests and it will give us enough time to compare the recommendation of this RI with the local specialist’s and make a decision, before May, if we should pursue LIT at my home country (in case the test results say we need it).

There’s, however, another source of worrying with this plan (well, more than one, considering my relationship with my parents’ and my sister being somewhat complicated and living at my parents’ for so long not an easy task). My home country, being in South America, is infested with Zika virus. I’m sure by now everyone have heard of the correlation between Zika infection and babies being born with microcephaly, encephalitis, stillborn and miscarriages. Since it’s a new discovery, there are no cures and no vaccines yet and doctors can’t even say for sure for how long after an infection it would still be dangerous to attempt pregnancy. The current advice is to wait 2 months. 

March til May is the raining season in my hometown, which means mosquito season. Right when I expect to be there. Zika is transmitted by the same mosquito that transmits Dengue (a more dangerous disease than Zika, but not especially threatening to unborn babies). When thinking about how widely spread Dengue is, and how virtually everyone I know have had it at one point or another (I’m one of the lucky few to never have gotten it), it scares the hell out of me how easy it probably is to catch Zika. However I can also turn it around and realise we never got Dengue when visiting my family, even though we never used any protection against mosquitos.

We are only staying for a week at first (Easter) and I’ll cover myself top to bottom in repellent. We are also not having a FET in less than two months after we’re back, so we believe it’s a small risk. 

In case we’re unlucky enough to catch Zika and it somehow impact our future child (many may have Zika during pregnancy and still have healthy babies), I’ll probably never forgive myself for taking this seemly unnecessary risk. But is it really fair? Aren’t we risking ourselves to getting hit by a car every time we walk on the streets or dying on a plane crash each time we fly? We can’t control these events any more than I can control the outcome of my pregnancies (with or without Zika), so I’ll bathe in mosquito repellent and hope for the best during that one week. A longer stay poses a higher risk, but we decided to discuss it with the doctor over there before making our final decision.

In case you’re wondering why would I trust this RI any more than I trust the local specialist, I’ll answer you sincerely: I don’t. And because of that, I’ve also booked a free 10 minutes Skype consultation with Dr. Braverman (considered by many the best RI in the world). I want to hear his opinion on my case and what are the opportunities for long-distance treatment. I’ve also started on my US Visa application, in case we decide to go to NY to be examined by him. 

In short, here is where we stand now: plan A is still to pursue treatment with the local specialist, since it’s the best option from a practical and financial point-of-view; plan B is to complement with other treatments in my home country, if necessary; plan C is to go after Dr. Braverman, in case the other treatments fail. 

If I seem desperate, I probably am. 

Insomnia or reality?

 

It was the end of 2012 and we were still living in Beijing, China, but with everything ready to move back to Scandinavia: work contract signed, apartment rented, air plane tickets bought and all our stuff packed up and ready to be shipped across the ocean.

We were excited to be coming back and ready to leave that two-year adventure behind and start a new one: a family. I’ve already been looking at houses and station wagons for sale and had started taking folic acid supplements, so the next logical step was to stop taking the birth control pill.

Arriving here, just before Christmas, there was so much snow everywhere it made everything a little more hectic; yet the purity and silence of fresh snow matched perfectly the idea of a new beginning.

Those first months were nothing but crazy: new jobs, looking for a house and a car, discussing loans with banks, insurances, buying furniture, unpacking… There was little time to worry about not getting pregnant, though it didn’t stop the disappointment of getting my period every month.

By April, we were settled on our new 4 bedroom house with a big backyard, furnished and decorated, ready for this family to get started, but without a pregnancy in sight. My periods were just getting longer and longer every month and already reaching 40 days. That was the time I started worrying whether I was even ovulating and decided to see a doctor for advice.

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This is how our journey to parenthood started. In November 2013 followed the first pregnancy and first loss, with such raw emotions that can only be lived once.

Today, over three years after those dreams started to materialize, I found myself in the same, yet new, situation: same house, empty ‘baby room’; same grassy backyard without flowers; same car, without a baby seat; same employer, same job; same marriage.

The future I had envisioned when dreaming of returning to Europe was another; one with a beautiful crib in the next door room to ours, with a doll house in the garden, with toddler laughter and Lego pieces all over the floor, with lazy Saturday mornings of cuddles in bed and pancakes for breakfast.

As my old friend insomnia makes herself comfortable in my bed again, I search for books to keep me company during these too early hours of the day and run into “The Book of Disquiet”, from the great writer and poet Fernando Pessoa. Considering purchasing it, I find a passage that seems to describe this moment in my life so perfectly:

[Life is] the waking insomnia of [our] dreams. 

Laying awake in bed or fulfilling my duties at work, I’m only truly waiting; anxiously counting the days and years as the insomniac counts the hours; hoping I can soon return to where I really want to be: in my dreams. Those dreams I still hold on to since 2012.

Will somebody help me fall sleep?

Crushed expectations

It’s a new year. Christmas is behind us. Most people is back to work and to their normal routines. I’m still on vacation for another week, which is great. I’m still at my husband’s home country, which is not always easy.

We arrived the weekend before Christmas. I fell sick with hay fever immediately, which has progressed into a nasty cough and difficulty breathing (I’m suspecting bronchitis, but didn’t bother seeing a doctor). I always get allergies here, it’s the high humidity together with bad housing habits (such as never opening any windows!) and the bedroom of my husband’s brother which constantly emanates cigarette fumes.

I’m so tired of being sick and no medicine is helping. I’ve also got eczema and psoriasis all over my face. Makes me think my immune system has gone haywire. I’ve told my husband I’m not coming here if I’m pregnant, I’m pretty sure these reactions could harm the pregnancy.

We spent Christmas Eve and day at his aunt’s in the countryside, as usual. It was fine. There were times I had to hide and cry, but overall not too bad. 

I never feel like I really belong when I’m with his family or his parents. I guess it’s not unexpected when I’m from another country and we see each other about once or twice a year, at best. Although I shouldn’t assume to be close to them in these conditions, living far away, being from a different culture, it still bothers me, feeling inadequate. 

I think these feelings are more pronounced now because I always hoped that once we had a child I’d finally be part of his family. A baby, half him and half me, would connect me to his relatives like nothing else could. A grandchild would bring his mother and I together, at last. This is probably an unrealistic, romantic idea, but I’ve hold onto it for too long and being here once again, feeling just as far away from a baby as 3 years ago, simply brings me down.

However this was not my biggest disappointment these holidays. I don’t expect his relatives to understand how hard this is for me or to show compassion for my struggle, especially when we’re not even that close. That’s ok with me, I just hold it in and pretend everything is fine. 

I did expect, though, that they would be more supportive of my husband. He’s been having a hard time and, just before we left, he wrote a lengthy and emotional email to his parents opening up about how he’s been feeling and telling them he’s taking medicine for anxiety. They replied that they’re shocked but they’d talk once we arrived. 

I spent several days in anxious anticipation for a Big Talk, feeling like a teenager again, when my parents would sit across me on the sofa to complain about something I was doing wrong. The talk never came. Actually, they never mentioned anything about our situation and never even asked him how he was doing. There were no questions about future treatments or next steps either. Just complete and utter silence.

I know better than to await support or sensitive comments from my parents. I’ve learned the hard way they’re simply not equipped for that. But I expected more from his parents. His family always seemed like this TV-show-from-the-80’s perfect family, all hugs and I-love-you’s. I thought they were going to be there for him; not for me, but at least for him. My husband: their son, nephew or cousin is hurting and no one, absolutely no one, offered a ear, a longer hug, words of compassion. Only silence and pretending all is fine. Denial. 

One situation in particular sickened me. My husband’s cousin, who has always been so close to him and who he considers like a big brother, made a comment that got me fuming. We were doing a short hike in the hills around town and his cousin was complaining to my husband that he hadn’t organised his mother’s surprise birthday party yet (she’s turning 60 in a week; her birthday is actually the reason we’re staying here so long). My husband replied with something on the lines of I don’t think I’m in a good state to throw a party, I have too much on my mind lately. I felt like he was trying to open up, to give him a clue. But his cousin, very dismissively, said: I can’t imagine what can be on your mind; you’re on vacation, there can’t be anything worrying you right now!. My husband, of course, stepped back and agreed to handle everything soon (which he didn’t because he really can’t right now, but nobody seems to understand or care). I was so angry, I wanted to yell at him, call him insensitive or worse. But of course I didn’t do anything, I don’t want to get between them. 

We are doing better now. We left on a little trip just the two of us after Christmas. We are staying in a hotel (my health is thankful for that) and the plan was to have many nice, long walks, but we’ve been a little unlucky with the weather. It’s raining a lot, so sometimes we manage to take a walk in nature or sightsee the area, other times we are simply relaxing, watching movies, reading a book or taking a long bath. That’s just what we need now. And I need to reenergise before going back to my in-laws’. 

I’ll leave you with some pics of the area, it’s really beautiful, I recommend a visit!

   
    
  
 

Happy new year

I haven’t been posting, haven’t been finding the time to write during the vacation. However, as 2016 approaches, I’d just like to say a few words.

This year, as I faced more disappointment, more hardships and another loss, I’ve also found the incredible support from this online community, which has helped me immensely. Thank you to each and every one of you for your words of compassion and encouragement. 

I hope 2016 will be a better year for all of us and wish you find the strength to fight for your happiness, in whatever way or form it may come.

  
  

Declaration of love

My husband is not the most romantic kind of guy. Buying flowers or writing love poems doesn’t come naturally to him. He never even made the big wedding proposal. I always knew that’s who he is, and I love him as he is, so it’s not a problem for me.

On our wedding ceremony, we were expecting that during the exchange of rings we were going to repeat after the officiant, so we didn’t prepare anything. When the moment actually came, he asked us to say our vows. Both my husband and I froze at the moment; we had to improvise and come up with something at the spot. He said a simple “I love you so much”, which he could barely pronounce as he started to tear up. It meant everything to me; even though he didn’t say much, I could see it all in his eyes. That moment is what most people remember best from our wedding. It was truly emotional and beautiful.

He’s maybe not the most romantic guy out there, but he’s amazing with kids. Every kid, of any age, loves him. He just have a way with them, I can’t explain. I used to love watching him play with our friends’ or my siblings’ children. Now, it breaks my heart. I know that being a father is his biggest desire and it kills me that I can’t do this for him.

Lately he’s been having a hard time coping. As his optimism failed, he now has to find something else to hold on to. He started seeing a therapist to help him through it.

The other day, when I arrived home from work, he was in bed, reading. I lay down with him and we started talking. He was saying how he’s been feeling sad and that he thinks only now he’s started to allow himself to grieve all our losses, not only our babies, but our dreams and ideas of the future. He also told me the psychologist had suggested that he tries to imagine how can our life be if the treatments don’t succeed.

We’re talking about this when he said: I love you and I want to be with you even if we can’t have children. I didn’t marry you only for having children, I married you to be with you. I was very glad he said that, and replied: I know, I feel the same, but when we married we expected children, we both wanted children and agreed to have children. His answer was the best declaration of love I could ever wish for at this moment in our lives: I would still have married you even if I knew beforehand that we couldn’t have children together. Tears started rolling down my face, we hugged and cried together for a little while. 

These simple words may be taken for granted by others not struggling so much to carry a baby to term, or if I didn’t blame myself and my body for this failure. Right now, however, it means the world to me. It means we will manage to be ok, no matter what the future brings. Together.

Picture of us made by a manga artist in Kyoto.

Baby talk

It’s everywhere. There are no safe places. There’s no escaping it. It comes when and where we least expect and we can never be prepared enough for it.

It happens at work, in the canteen during lunch, when a friend from the Beijing office visiting the headquarters asks me in front of everyone: how about your baby? Where’s your baby? How come there’s no baby yet?, as she expected me to start trying 3 years ago when I finished my 2 years stationing period in Beijing. If only she knew that I did start trying 3 years ago… I answer simply: No baby yet, and ignore the puzzled eyes all around me in the lunch table waiting for more explanations.

Or when another friend comes back from her year long maternity leave and asks me on the corridor, what about you, any news?, as she knew we were trying and knew about the first 2 losses. To which I asnwer: well, I’ve lost 2 more babies since you left for mat leave. She replies, wow, I don’t know how you can handle it, but immeaditelly proceeds to tell me every detail of her labour and how it was the most horrible experience of her life (is this supposed to make me feel better about my losses, because it doesn’t really work).

Or when I get backed into a corner in the lady’s room by another colleague, asking me: have you heard about IVF? You probably qualify for public funded IVF, did you know? Have you tried? She pushes and pushes on the subject until I feel forced to tell her my whole story, even though I’m not close enough to her.

Or when I arrive at my desk to find a one year something toddler siting on my chair, playing with my stuff, drooling on my notes and feel forced to smile and play with him although I really just want to scream.

Or when another colleague, still in mat leave, brings her few months old child to the office and it somehow ends up in my arms, while all my colleagues are laughing and jokingly saying: be careful, it’s contagious (I so wish it was true).

Or when I’m at the quiropractor (because of general pains I get from tension and stress which always get worse after another loss) and she asks me what exercises I do, and when I say I’ve stopped running and only do yoga and walk as per doctor recommendation, she wants to know why. I try to say as nonchalantly as possible: we’re trying to have a child but we’ve lost 4 babies so far. She asks again, how many?, and after hearing 4 another time, she says, with little compassion on her voice, I guess that must be hard. I, trying to hold it together, answer simply, yes, it’s very hard. Which is followed by several minutes of awkward silence.

Or when I’m at Yoga class, hoping to relax a bit, and the instructor asks me: are you pregnant? (maybe due to gaining some weight since the last miscarriage) and after hearing no, continues to say: You have to tell me if you get pregnant, because there are exercises you can’t do. I feel extremelly embarrassed with all heads turned to me, not knowing what to say, when in reality I’ve been pregnant and miscarried twice since starting in this class. During the first minutes of guided relaxation, I can’t help but feel the tears rolling down my face, and just hope no one else is noticing it.

I could go on and on with more examples, but I’m sure we all have our own collection of similar situations. They can’t be avoided. It just feels exhausting sometimes. 

Winter beauty 

In these years living in Scandinavia, I’ve come to appreciate the winter season. There’s something especially peaceful about a pristine blue sky winter day, like today. The crispy air (when not too windy) feels pure and cleansing. I love the sensations brought by a beautiful winter day.

Today, being one of these gorgeous days, my husband and I went for a relaxing walk around our little town and the woods behind our house.

 

Woods nearby our house.

  

The stream is full and muddy from all the rain of the past days.

  

Our street is visible when coming out of the woods.

  

View of our little town from the lake.

  

View of the summer royal palace from the lake.

 
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Strolling down surrounded by nature, talking about great memories we hold of the two of us traveling around the world together, made me think of why we chose to live here. It made me feel grateful and fortunate for all the good things we have, a nice home, good jobs that allow us to afford it, plenty of paid vacation days and much more.

We shouldn’t let the hardships of life completely cloud the good things we have going on. I’m trying to be better at this.