So Close

JHB Infertility Support Group Meeting

Next JHB support group meeting will be held on the 31st July. More details here.

What is stopping you from doing just one more IVF?

My answer?

80% too poor
10% too old
10% too much without hope that would work anyway

If I had unlimited funds, I would carry on trying until we had another one.  The pain / hormones / discomfort etc aren't enough to put me off.  The money is.

(if you choose 'other' on the poll, please enter your reason in the space provided. if you want to)

Look away, I am about to have a ‘moment’

You know how sometimes those close to us (or even sometimes ourselves) will have one of those ‘moments; a brief emotional outburst where they spew stuff that isn’t very pretty to see. A real ‘poor me’ moment where they rant / rave / cry / wail about how unfair the universe is to them. 

If you are a good friend you will know that the last thing they want is for you to try make them feel better, or point out all the things they should be grateful for and how silly or childish they are being. Instead you know what they need is for you to just be there for them, and perhaps utter the words they need to hear: “Yes, it is damn unfair and I am really sorry you are going through this.” Whatever the ‘this’ might be.

So, get ready, I am about to have a ‘moment’ ……..

Start of Moment….

I am so insanely jealous of all those people who are able to CHOOSE when to have children and how many to have. Who decide ‘yes, lets have one’, have sex and bam! they are pregnant. No injections, no doctors visits, no pain / heartache / invasive procedures. Just sex, and then a baby.

I am so insanely jealous of those who get pregnant and are able to enjoy their pregnancy without the debilitating fear. Without bedrest, weekly scans and constant terror. Just swollen bellies and happy moments. Instead of losing four out of their five pregnancies. How fucked up is that!

I am jealous of those people who get pregnant on their first IVF, or even worse, Clomid or IUI’s. I don’t hate them (good luck to them), but I feel like an absolute and total fuck up of a failure in comparison. I hate that I feel like this. It makes me feel bitter and jealous. Which I guess I am.

I am bitter that it took me so long to get to this point, that I wasted so many years living in the hell that is infertility. I am as mad as hell that I am almost 39 and I started this shit when I was 31, that isn’t fair.

I hate that I still carry the bitterness in my heart, I hate that it STILL hurts so much. I hate that no matter how much I try and convince myself otherwise, this shit still makes me feel like a failure. 

I am sad and mad that after all I have been through; I had to go through this again and fail. Have I not been through enough? 

It’s not you. I don’t hate you, I don’t want you not to have what you have, I am just so jealous that I don’t have it too. 

And yes, I know there is cancer / poverty / war / heartache / loss / sorrow etc, and I know I have so much to be grateful for. I know that I am incredibly blessed to have my two beautiful children (at what cost, my friends, at what terrible cost). I know all of that. But dammit all, I wanted this to work. I wanted another baby. I tried, and I failed yet again. And it hurts.

Life can be bloody unfair sometimes.

……End of Moment.

There we go, rant over.  I feel better now. Thanks for not trying to make me feel better or wave all the bad feelings away. Thanks for just being there and for your ongoing support, even in the ugly times. 

I’ve done this enough times to know that it is not over until it’s over (i.e. the blood test says it’s over), but you know how sometimes you just know? Well, besides the glaring evidence of the three negative tests, I really do know that it hasn’t worked. I will still go for the blood test on Monday, but I know in my heart and in my head it hasn’t worked. And I really am ok about it. I just needed to stamp my feet and cry my tears, which I have done and I am ready to be skippy again.

I’m fine, I really am. I just needed to have my little ‘moment’. I am ready to move on with the next phase in my life. They say life begins at 40. Well, bring it on. I am ready for the good times.  My thirties were spent in anguish and frustration. No more. From now I am going to live, laugh and love. This is going to be my decade to be fabulous, just you wait and see! 

And then you get people like these who make it all just a little bit easier to bear

An email I received yesterday. It made me weep. Thank God for people like these, and for all the people who helped me so much along the way. Without you, I wouldn't have made it.

Hi there

it was so weird reading your book "so close''

See we (I) work at a genetics lab in (xxx) hospital and we do PGD's, lots of them, why it was weird reading your book is because I knew exactly who all the people were you were talking about. DR H< K < DR G and that made your book so much more real.

I laughed at your comments about certain people and loved that you loved the others.

Doing PGD's feels like we are part of the bigger team helping those who really wants, needs help and it is so rewarding having a happy ever after.

The thing I dislike about the work is we don't always know the story behind the PGD's and I want to thank you for telling your story so that we can see and feel and experience the heartache and joy of the person behind the lab number.

We will receive the slides with the one single cell on, which we refer to as our little babies, with out knowing the back round of the patients, why they do it, who they are and what the end result is.

Some times we will find out that the patients are actually pregnant and let me tell you it is so exciting we will go around telling every body who wants to listen that we are pregnant we are having a boy or a girl and that we met the little ones before they were even implanted.

It is a love hate job I love phoning the embryologist and telling then that one or more of the babies are normal but the same time if there are no normal babies it's always a Mexican stand off of who will actually phone because I hate giving bad news and now that I read your book I think it will be even worse.

The lady who happened to do your PGD is the sweetest person in the world. Every time we don't have good news she will cry for the babies and for the patients, how I hate it because when she cries we cry.

But just so you know in your struggle for motherhood there were a lot of unseen unknown faces who's hearts broke who shed tears and who eventually shared your (and all the struggling people out there) joy. 

good luck with your beautiful babies

kind regards

the pgd sisters

My desperation, your whimsy.

I feel that I must respond to some of the comments made on the ‘desperation’ post below. Please note this is not personal, but more a response to what many people say and think. The ‘you’ I am talking to is not YOU. It’s a theoretical ‘you’. I almost didn't post it, because I don't want to alienate the many fertiles who do 'get it', but I needed to voice my thoughts.

Firstly, let me say that I do not agree with this couple’s attempt at raising money for their IVF. I found the email deeply disturbing, upsetting and actually really insensitive. Sending me a letter in the voice of a dead baby when I lost a baby is absolutely not on. At all. It is wrong on every level.  I won’t be giving them any money because firstly I don’t have any to give and secondly, there are (many) other people who I feel need it more. However, I understand that when you are feeling that desperate, you will resort to anything. I didn’t post it because I wanted to raise funds for them, not at all. I posted it because I thought it spoke of the desperation these people must feel.

And of course, they have done themselves absolutely no favours by responding the way they did in their final comment below. That is not going to win them much support. But again, I recognize that anger. It doesn’t make it right, but I know where it is coming from.

I am not their friend, I don’t condone what they are doing, but I can understand their pain. I wish them well, I hope that they have a child one day, but I hope they will not contact me again. It hurts, please stop.

Then, on to your comments.

Firstly, let me say this: It is not our (infertiles) responsibility to ‘save’ the needy and the poor. Just because we are infertile doesn’t mean it is our duty to look after all the orphaned children in the world. That is your responsibility as much as it is mine. I could turn that argument on its head. You already have bio children of your own, why don’t YOU just adopt / “save the orphans”? Recognize that there are others who would like to at least try for bio kids of their own. Adoption is something you do because it feels right for you, for your family and for that child. It is not second best or a consolation prize, nor is it the sole responsibility of those who are infertile.

And then, on to issue of desperation. Yes, infertiles do not have the monopoly on suffering. I never pretended we did. But does it mean that because there is suffering elsewhere in the world, ours is negated? Should we shut up and just deal with it because there are others who have pain? If you lose a leg and I lose an arm, should I shut up about my pain because losing a leg is so much worse? If your pain is a 10 out of 10, does it mean that anything less is ‘nothing’?

I do know I should be grateful it is only arms when others don’t have legs. I know that.  I could argue it is easy for you say, you have both legs and arms.

Yes, there is poverty, and there is disease and there are very many needy people out there. I know this. Does this mean I should want a child any less? Because there are (many) motherless children out there, does it mean I should be a childless mother? Because my ‘disease’ is infertility, does this make me any less worthy of what many people take for granted? You wanted to become a mother, surely you understand that others might too?

Look, I am a realist. I know that there are many people out there who are hungry, cold and sick. I live in Africa. I see this every day.  I would be blind not to see it.

When I was still trying, before Adam and Kate, I used to leave for work very early, while it was still dark. On the way to work, I had to drive past a hospital, with a specialist cardiology unit attached to it. It was lit up in the pitch black of the early morning and I could see right into the ward. I could see the (mostly) men lying there, so still. Dangerously ill. Near death. Like my father was when he had his heart attack and triple bypass a few years back. And every time I drove past there, I was so grateful that infertility was my cross to bear; that it wasn’t my father lying there. That the pain in my heart was from infertility and not from losing my father. That it was me hurting and not him sick.

I do have perspective. But I also know pain.

No infertile has ever said “my pain is worse than that person’s hunger, that person’s pain, that person’s grief”. Ever. It is you who make those comparisons, not us. We know we don’t have the monopoly on pain and suffering. All we know is that our hearts ache and our arms are empty. I’m sorry if you feel we should just suck it up and get over it because others suffer more.

Yes, infertiles do not have the monopoly on pain, but that doesn’t mean their pain doesn’t exist.  In the face of so much pain, hunger and suffering in the world, their pain might seem insignificant to you, but it is very real to them. I am enormously grateful that I no longer have to live with that pain. But it doesn’t mean I’ve forgotten or that I don’t recognize it in others. It might not be your pain, but it is mine, theirs and many others. Just because they still have legs doesn’t mean they don’t mourn the loss of their arms.

The horribly familiar smell of desperation

 I received an email yesterday. It is the third time I have received the same email. The same content has also been posted on both this blog (in several places) and on my Stork Sisters infertility support site.

It is a letter addressed to me, written in Afrikaans. It is from a couple who live a little way away from where I live. They are infertile too. They did an IVF, which worked but it ended tragically when their son was delivered prematurely due to HELLP syndrome. He died 24 hours after being born. Tragic. The letter includes pictures of the little boy, shortly after his death. With all the pipes and tubes still attached. A photo just like the ones I have of Ben. Tragic, painful, distressingly familiar.

It is a terribly disturbing email, and not only because it is worded as if written by the little dead baby (“Hello Tertia. My name is Conrad but I am no longer alive. Please help my mommy and daddy have another baby”). Not only because it contains the photo of the little boy. Not even because receiving that email takes my breath away every time I get it, and not because it is begging me to contribute financially towards their next IVF (it even contains their bank account details). No, the thing that disturbs me more than any of that, is that I recognize that smell. It is the smell of sheer desperation. It turns my stomach because it is so cloyingly familiar.

When I was going through my IVF’s, especially after I lost Ben, I would have done ANYTHING to try again. Anything and everything that it took to do another IVF.  I would have begged if I thought begging would help. There were times when I reached such lows that I would have sold my soul (and anything else that would get me enough money to try again) in order to do another cycle. And I mean anything. I remember sitting at my parent’s house one night. About a month after Ben died. Hoping that would offer money for us to try again. Wondering what I could do to get that money together if they didn’t offer (they didn’t, but we managed to find the money). I don’t want to tell you the options I considered that night. I was so desperate, feral. Scary. 

It must be hard for someone who hasn’t lived through the deepest darkest moments of long term infertility (the moments where you are looking down the barrel of a unwanted childless future) to perhaps truly understand just how deep deep deep this longing is, the fear is. It is so deep, so strong, so all consuming that research has shown that infertility patients are second only to cancer patients in what they will endure to find healing / to have a child. I would have done anything to find the money to try again.

And so even though I find the email deeply disturbing, on so many levels, I can’t be angry at the couple who keep sending it to me, because I know where they are coming from, I know it too well. I know that smell, it is so terrifyingly familiar.

A letter from an egg donor

(I've added a poll at the end of this post)

A letter from a friend of mine who is an egg donor. 

Hey T,

I've gotten myself into a bit of a tricky situation. I need some outside advice.

I've done 7 egg donations. I basically did them one after another for 2 years while I was in grad school. It was a very rewarding thing, despite the hassle. I do exactly the same process as someone getting IVF up through the retrieval. It was painful at times, and took up a lot of time and energy. It was  unpredictable, since the retrieval day and the associated appointments are determined by how the follicles are developing. I also can't run for the month surrounding the retrieval, which drives me crazy. Running is the one thing I do to stay sane, and it's bad to take that away when the hormones are all messed up. Still, I knew I was doing an important thing. The money was nice, though not my main reason. I loved that I was helping people in a really difficult and important life situation.

I haven't done a donation in 2 years, even though the clinic has occasionally called to tell me a bunch of different couples want to use me as a donor. I needed a break. Now that I have a real job and responsibilities, the hassle of it is even more significant. I also am divorced, so I don't have my very supportive husband here to help me through it.

The clinic called me on Friday. A couple that I donated before had a child from it. They tried an FET with the remaining embryos and it failed. They want to have a second child that's genetically related on both sides to their first one. Thus, they need me to do another donation. I agreed to do it, because I see how important that can be for a couple, and because it seemed pretty damned selfish to say "no" just because I didn't want to suffer for a few months. The clinic told the parents and everyone is very excited that I've agreed to do this.

But every time I think about it, I am seized with anxiety. I really really really don't want to do it I don't want to go through the pain and the swelling and the crazy birth control (I'm on a nice 3 month low dose with extra estrogen to prevent migraines right now. The stuff they make me take causes debilitating migraines for 10 days when I stop the real pills until I'm fully back on them). I don't want to stop running or deal with the schedule of doing an IVF within the first few months of starting my new job. I may potentially have to skip some work travel if I do this. And I don't want to stop running for that month. I don't need the money, and it doesn't affect my decision. Everything about the process makes me want to run away, except I feel this weird moral obligation to the recipient family.

So the question is, what do I do? If I back out, will I be devastating this family? Is this the kind of thing where they might skip having a second child rather than getting another donor? Should that matter in my decision? I would really like some honest feedback about this, from you or from others who may understand this situation. Right now, I feel like I'm going to be overwhelmed with anxiety and crying until this is all done sometime in late November.

                           ---------------------------------------------------------

What would you say to my friend?  Please state in your reply whether you are dealing with infertility or not.  I would like to see how that affects your opinion, if at all.

Survival kits

 They (the people who make things) should make special survival kits for people in need.  Instead of a Hallmark card, we should be able to order these kits for the people who really need them.

Like a BFN (big fat negative) Survival Kit for people who have just got a negative result on an infertility cycle.

Or for a Freshly Broken Heart Survival Kit for friends

Etc.

For example, the BFN Survival Kit would include:

• 1x Bottle of the best wine around. Decadent, expensive wine because ‘fuck that, this infertility shit just cost me an arm and a leg and I deserve to drink good damn wine’
• 1x platter of sushi, because you just spent the last month not eating it, just in case
• 1x hamper of the softest cheese you can find (as above)
• 1x sinfully huge box of chocolates. NOT FOR SHARING.
• A flask of heavily caffeinated coffee
• 1x large packet of chips (MSG and preservatives a bonus). With or without dip.
• 1x box of tissues
• A box of smokes. Even if you don’t smoke.
• A voucher for a massage
• 2x DVD’s to watch while drinking the wine and eating the chocolate. Neither of them have any children or pregnant women in them, at all.
• 2x pain pills – one for the period pains (oh thank you God for the reminder) and one for the morning after the bottle of wine.
• 1x sleeping pill so that you can go to sleep and not have to think about the 20k you’ve just pissed down the drain. Literally.

What else? What have I forgotten?

In fact, you could probably use the same ingredients for the Freshly Broken Heart Survival Kit. With a few variations. Same thing really.

So much better than getting a card that says “I’m sorry”, don’t you think? Could have used a kit like that a few times over the years.

Sorry guys! Didn't mean to make you think my cycle had failed, I still have a way to go. This post is in reaction to many of my friends getting BFN's recently. But you are welcome to hold your thoughts over for when I get my results ;-)  Going for my first lining check today. Think of me.

Hey, that's me!!!

From the MSNBC site:

U.S. women crossing globe for fertility help

"She was inspired to investigate South Africa, among other countries, as she’d been following the blog of a South African woman who’d been navigating her own fertility problems."

Me! That's me! Famous!!  Small world, isn't it. 

Read the full article here

BTW, I have met the lovely lady in question when she came to South Africa and she is a fabulous person. So wonderful to see her and her two gorgeous daughters. Can't believe they are a year already, feels like yesterday that we met for lunch!

 

The Monster and me.

My sister did a post on her feelings about my doing the FET. She is terrified, and while that makes me feel terribly guilty, I don’t blame her. Please go read her post and then come back here.

I know that monster she is talking about. I know that monster all too well. I know that monster because that monster lived within me. That monster was me.

Taken from my book:

“It's like I have this black, oily monster living inside my chest cavity, I explain to the psychiatrist. I can feel it, physically feel it. It's made up of all the pain and emotion I've felt since embarking on this journey, all the tears I turned inward instead of out. It is made up of hurt, fear, envy – of hopelessness and helplessness, of terror and tightly suppressed hysteria, of bitterness. But mostly it is made up of hot, dark, debilitating anger turned to ice-cold rage. Anger at the world, at God, at fate, at my body, my life, my circumstances. The worst thing about this rage is that I can’t direct it at anyone; it's no one’s fault. I can’t let it out in case people see – so it festers inside, it boils and bubbles, rotting, destroying me. This monster lives inside my chest, alongside my broken heart and empty, barren, childless soul.

It started off small, this tenant monster. But it’s growing and it is consuming me. There are times when it gets so big it threatens to choke me. I can hardly breathe, I can’t speak, my chest burns because the monster is choking me. I can’t get air, my throat is burning. I keep swallowing, swallowing all the time, swallowing the monster back down again. I'm scared to open my throat in case the oily mess starts oozing out, in case I drown in it. Once I start to spew this monster out of my mouth, I fear it will never stop. I will disgorge this black, oily mess. It will just come exploding from my mouth and people will be horrified. People will be disgusted; they will know how the trying is affecting me. They will make me stop trying. I can’t stop trying, ever – not until I have a child. I would rather die.”

Yes, I know that monster well; for a long time that monster was me. And I don’t blame my friends and family for being scared it will come back again.

Towards the end of the evening at the dinner on Wednesday night, a woman came up to me as I was standing on my own for a moment and quietly took my arm. She whispered “I’ve read your book three times; I bought it to try and understand what my daughter was going through”. She explained that there was so much pain and misunderstanding between her and her infertile daughter. She tried so hard to be close to her daughter, to help her, but her daughter kept pushing her away. She was too raw and angry. She said to her daughter “I understand my darling” and her daughter spat back “You’ll never understand”. I felt so much for this poor woman. My heart ached for her and for her daughter. Her daughter could have been me. It is so hard, for everyone involved, not just those of us going through the infertility.

When you are in the middle of the infertility hell, it is hard to see beyond your own pain to that of others. The sister, the mother, the best friend who try as they might, just can’t seem to say or do the right things.

I explained to this woman that somehow we seem to take it out on the people closest to us. I did that with my sister. The person closest to me. I was the hardest on her. We went from being best friends to me not being able to be near her. I shunned her totally. It has taken almost 2 years to repair our relationship and it is only through her capacity for forgiveness and my inner healing that we have repaired our relationship.

That monster who lived in my soul for so long, is now long gone. It has left a few scars, reminders of the long time it lived there, but it has gone. Really gone. Yes, I will be sad when / if this cycle fails, but I will never again allow the monster to consume me. I have my children now; the monster holds no power over me. But I don’t blame my friends and family for being scared. It was a terrifying monster, for all of us.