Out of the blue

I had to share something that just blew my socks off with kindness. But also because I want to be able to reread this again over and over. Never one for sharing his emotions or believing in fate or destiny or cheesy emotional interactions, the Hubs came up to me as I was laying in bed, and out of the blue came out with this:

“The other night when we were holding each after receiving even more bad news I had this weird sixth sense kind of feeling come over me. It hit me like a brick. I’ve never felt anything stronger. It was an absolute complete sense of knowing that this is going to happen for us. It scared me a little bit because it was so strong and overpowering but it pulsated from your body. It was a message from your body to mine that we are going to get through this with the result we want.

Your body is intelligent, it knows what to do, it wants the chance to do this. But it’s waiting for your mind to catch up. I know it’s hard but the universe is telling us to have faith. There is now no doubt in my mind what the future holds for us.”

This is pretty much exactly what I needed to hear at that exact moment in time. I love that man. I wish I could keep him in my pocket all day long to remind me of his vision. Instead this post will have to do.

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Can of worms

So much has gone on in the last week. I don’t know where to start. Today I’ll try to recap the latest from all the recent investigations.

Test results are back. Here’s what’s been done, or retaken in the last five weeks to investigate the reasons for our multiple losses:

uNK cells via biopsy
Leukocyte Antibody Detection
HLA DQ Alpha Antigens
NK Assay Panel
TH1/TH2 Cytokine Ratio
MTHFR
LFT Liver Function test
AMH
FSH
LH
Prolactin
Thyroid Antibodies
Thyroid function
Anti phospholipid antibodies APA
Karyotyping (still waiting for that one)

Many of these came back normal. Four did not.

1) Endometrial biopsy came back borderline abnormal. uNK cells present, not super present, but enough to possibly cause issues. Treatment so far will begin with progesterone only, no steroids yet which I am thankful for. But steroids might be introduced after BFP, if that ever happens.

2) My anti cardiolipin antibodies in the APA screen came back positive. These produce an autoimmune response that prevents the fusion of cells that help the embryo to attach firmly and grow deeply into the womb lining. I’ve been tested for this before and it was negative so will be tested a third time to confirm it. In the meantime this will be treated with Clexane injections at BFP in addition to the 150mg aspirin for the increased clot strength I already have. This could also explain our RPL.

3) Leukocyte antibody detection panel also came back abnormal. This is when the mother’s body has an inadequate response to the growing embryo and will be unable to produce antibodies that protect the embryo from rejection and stimulate growth of the placenta. We haven’t had a chance to discuss this with our reproductive immunologist yet but we know from previous discussions with him that the treatment is LIT. White blood cells from Hubs are injected into my body to get it to produce blocking antibodies that will protect the embryo.

These three results are manageable. We can work with these. Sadly though they are all dependent on a BFP. But the next one is the one that could prevent us from dealing with the first three at all.

4) AMH. It plummeted from 12.9 to 2.1. In 8 months. For those of you in North America that’s 1.8 to .29. A shocking drop. This is most definitely NOT good. And we don’t know why. I spent much of that time pregnant, how can that drop so quickly? How can that number reflect my egg reserve if no eggs were spent for over four of those months? At this rate they’ll be no egg reserve by the end of this year. I am terrified. After hearing the news a complete meltdown of crying, destroying and dry heaving took place.

Unfortunately my GP who delivered the news doesn’t really understand the role AMH plays in fertility. She quite bluntly said I’m likely no longer a contender for IVF at all, especially since we won’t be able to start it until January (ie the drop is so rapid that next year will be too late). We’ve been at the top of the NHS IVF list for months but we put it off 1) because we were already pregnant and 2) because we were hopeful since I could get pregnant that IVF wouldn’t be necessary.

How could I go from being ‘super fertile’ to having nearly no viable eggs left in such a short time?

I frantically researched AMH when I found out, as I did back in January when a consultant flippantly said donor eggs was our only route (we had two BFPs since that day BTW) and its role in infertility and came up with some really conflicting results, particularly when women are able to conceive naturally. Our consultant at the RPL clinic advised us previously that AMH wasn’t that important if we can conceieve naturally and that drugs from IVF might actually do more damage to than good to someone of my RPL history.

The fertility experts we’ve seen previously, back when getting knocked up wasn’t happening, thought they could work with my AMH as it was in January. But they also sided with the RPL clinic, thinking it probably isn’t suited to someone like me. My GP thinks they will be even less willing to work with my new number now. We’ll find out on the 22nd October when we have our next appointment with them. In the meantime we are considering going to a private IVF clinic so we don’t have to wait. There is still so much I don’t know or understand.

My new Chinese Medicine practitioner (love her) was completely dismissive of the AMH results. She tells me that the hormone, released by the antral follicles, is only as good as the follicles are in any given cycle. Given that I recently miscarried she believes the whole system is still recovering and the hormones are out of whack and if we test again in a few months things will likely improve. Even though western medicine suggests AMH can never improve she has seen it in her clients. She stressed what is important is the number of follicles, more than the hormone reading. I seem to have a decent number of follicles but no one knows whether they’re any good or not.

Right now we are waiting for further appointments with the various four professional groups. Feeling like we are swimming in opinions and information. Not knowing what’s real, what’s important, what to do next. It’s hard deciding who to believe. The RPL clinic? The fertility clinic? The reproductive immunologist? The Traditional Chinese Medicine practitioner? I have no freaking clue who to trust and I have a hard time hearing my gut at the moment. I don’t feel like I have the full picture.

This just feels like a cruel joke. It seems not only does my womb make a habit of losing babies but now the very essence of my ability to produce proper eggs at all is in doubt too. And to top it off, the beating heart of our last loss, the one who seemed to beat the RPL, AMH and age odds, stopped because of an independent fluke abnormality. F U universe, F U.

Keep em coming

Just wanted to thank you all for the wonderful reading material I’ve had over the last few days. It’s been pretty active out there in Blogworld and I’ve really enjoyed reading all the posts.

It’s been a while since my last post while I attempt to sort through job offers, digest medical reports and test results, coping with the breaking news that my SIL is pregnant, plus trying to figure out why I haven’t ovulated this cycle (WTF is that about?!) It’s pretty chaotic at the moment and I have a lot on my mind that I want to get down and will do when I get a moment to breathe and reflect. But in the meantime I’ve found the information and stories and feelings shared out there in Blogworld completely fascinating, informative, encouraging and heartfelt. I’ve been laughing and crying on my train journeys into work everyday. People think I’m mental! You ladies are all incredibly intelligent, humorous, insightful and strong.

Mental block

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Man I am really dragging my ass this cycle. I cannot for the life of me get into any meditation or tapes or mindfulness or visualisation or yoga or abdominal massage or anything remotely relaxing or mentally good for me. What is up with that?

I seem to be able to down my supplements and herbs every morning, to eat better again, to stay on top of nutrition and to do some moderate exercise. But there is some weird mental block in terms of trying to get into this all again.

I started listening to my Circle & Bloom MP3s again but they just make me feel exhausted. Even my old faithful Zita West isn’t doing it for me this time. They bring me back to the desperation I felt before the last BFP. It’s a horrible reminder how low I felt back then. I feel I’m in a different place now. Still desperate but different.

Maybe because there’s so much going on right now I haven’t made room for all these lovely things. I think it’s time to make time. I wonder what will make the switch. Probably one cycle of BFFN and I’ll be buckled in nice and tight back on the bandwagon again.

Reality bites

Holiday over. Summer over. Back to reality.

It’s been a tough week. I’m trying to find a new job. I’m quitting for many reasons but the main one is because one of my best friends and colleagues, the sweet pea thief, is expanding. In timing she’s due too close to what was my due date that all I see is what I’m missing. I should be 23w now but I’m not. I can no longer be around her. End of story.

I don’t like interviewing at the best of times. There are prospects but they aren’t super enticing. There isn’t much out there that’s interesting me. Is it because I’m in a bad place mentally and nothing is going to be good enough? Is it because I’m scared to leave a job while actively TTC? Is it because I don’t really want to leave a secure job that’s been so flexible for hospital, doctors and acupuncture appointments and would be great for returning to work after mat leave? Do I deep down feel like I’m taking the easy way out by quitting? Am I secretly hoping I’ll be pregnant soon so I won’t have to quit? Probably all of those things.

Change is scary right now. My life is in such limbo. This just adds to the confusion and insecurity that I already feel. I doubt my ability to make the right decision right now.

Given my current predicament, I’m faced with a dilemma:
1) take one of these job offers so I can be out of my current job as soon as possible
2) stay put until the right thing comes along and battle through it in the meantime
3) stay put and stay miserable for four more months.

I’ve been offered a position that doesn’t really excite me. I’m being pressured to decide by tomorrow and they aren’t even offering my baseline salary. There are other offers I think that will be coming through next week. But each day in my current office is hell. I can’t concentrate. I just stare at my screen hoping that she’ll leave the room. So I’m questioning whether to take the first job just to get out of there.

I’m hoping I won’t continue to be so unreasonable and that it will get easier. But I have enough reminders in life of my losses, I don’t need to stare it in the face everyday at work too. My new motto is screw everyone else and to be nicer to myself and sticking around to be tortured just simply isn’t very nice.

Having seen my therapist today she’s done up this crazy chart to enable me to give myself a break when it’s all feeling too much. Everything comes back to grief and loss.

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If I can give myself a break by seeing I’m still grieving things will feel less important. Lets just hope I can put it into practice. It didn’t make me feel any closer to a decision but I realise now that with any decision I’ll be ok.

Letter to friends

This is a letter I wish I had the courage to send but the truth is it will never go anywhere but here. It should be distributed to about 95% of my social circle. (Not you guys obviously, you’re already more supportive than I ever could have imagined.) It’s for everyone else who pretends they are my friend when it couldn’t feel further from the truth.
—————————————————

Dear friends,

You may have noticed in the past year that I have started pulling away. Started removing myself from social get-togethers. Stopped calling, emailing, visiting, quit Facebook. Many of you know the reason why, some of you know part of the reason why. But I don’t think any of you didn’t realise I was going through a difficult time.

Truth is I’m in a great deal of pain. I struggle to get up in the morning. I struggle to sleep and eat properly and all I think about is how empty I feel. I want nothing more than to stay in bed day after day. I don’t want to work or to hang out or to talk. I want this pain to go away.

And although I initiated this self-exile, no one has reached out to me to see if I am coping, to see how I am doing. Every one of you has been silent.

At first I was expected to carry on with normal life. To attend the birthday gatherings, carry on with laughing, small talk, gossip. Then slowly over time, after further losses, the cards stopped coming and the contact just stopped altogether.

It’s to be expected. I wouldn’t know how to deal with me if I was you. Because you are happy. You have a full life and family or you’re blissfully expecting or you don’t get what all the fuss is about. Some of you even know what it’s like to struggle to achieve a family but you got there in the end. And you are the ones, strangely, I’ve heard absolutely nothing from.

And although I’ve gone to great pains to avoid becoming the elephant in the room, or the one silently whispered about, that’s exactly what I seem to have become. And to no fault of your own. I realise how horrific my scenario might seem. By avoiding me you are avoiding pain. No one likes pain. It’s easier to look the other way.

And I know some of you wish I would stop dramatising and just pull my finger out. Snap out of it. Relax. I truly wish I could snap my fingers and change what’s happened, or to take the pain away. But I can’t. There is no going back. I have lost a part of myself and I won’t be the same person again. I don’t know if you could understand that if you haven’t been through it.

But I know one thing, and I don’t think it’s the experience with IF and RPL talking, but I never would have allowed a friend to endure this silently. I would have continued to try to connect, whatever response I got. Because people retreat when they’re in pain, like when animals retreat to lick their wounds. Support couldn’t be more important at a time like this.

There are one or two people who have been there for me. Checking in even if they know I’m at my lowest point. Insisting to see me so they can put their shoulder under my head. But this letter is not addressed to them.

What is now clear is who I can count on. Seriously count on. It’s a lot fewer people than I thought.

I’m not saying all this to get a response from you. Because I think we are past that now. I just want to get this off my chest because I feel it needs to be said. And I’m not saying it’s too late for us. I’m not saying I won’t bounce back one day or pick up the phone to start over.

That day feels like a long way away. After five losses none of it matters anymore. I’m not sure how long I will feel this way. But I would hope, as my friend, as a human being, that even if you don’t understand how I feel that you could empathise. And if you were to even encounter another friend going through a similar situation that you might take a different approach next time. At this point, this letter is more for them than it is for me.

Your friend,
Lisette

Blogroll

I’ve decided to add a page to keep track of all the great blogs I’m following. So after a bit of work it’s finally up and running.

Thanks to you all for the continued inspiration xx