Saying Goodbye to the Circus

I’ve seen a lot of posts lately, about people’s successes, and truly I am so happy for each of you who has toiled and suffered and worked so hard for the shimmering happiness that comes with getting a longed for positive, with each week that passes that brings you closer and closer to the safety zone. I do not begrudge your obsessive pee sticks, your burgeoning belly shots and your tentative steps toward a cautious joy. I  happily root for you. I sincerely hope that each of you finds that. I hope I find that.

But the posts about resentments have always made me wonder if I was a good fit for this community. How different my belief systems are, how much older I am,  how different my experiences have been, and all the ways those experiences have shaped me.  I don’t understand how you can wish like crazy for a baby and resent someone who has been on their own path through hell, a positive pee stick or a belly shot. Even in my current state of grief, I can’t grasp this thinking. I can’t wrap my head around it. I understand it. I’ve felt those twinges as well, but I have never given in to them. I never will allow myself to.

To be completely clear, I do not judge you if these are your feelings, they are yours. But I do not understand them in the grand scheme of things.

“Coming out” on Facebook has been nice, sort of. But embarrassing and kind of humiliating. The truth is I don’t think most of my “friends” really want to read about the misery I am currently experiencing. To be honest, I’m not sure I want to continue to share it. If I am brutally honest, I think it was kind of pathetic on my part, to call attention to it. Clearly it was me reaching out into the void, looking for support. I’ve said all  along I don’t have a support system. That has never been clearer and more “in my face” than since my embryo died. I call it an embryo because by medical definition, it wasn’t a fetus yet, and I can’t handle calling it a baby.

Yesterday, someone I respect said to me, “You are right. You really don’t have anyone in your life, like a best friend or a spouse that supports you, so you can’t afford to fall apart. You’re going to have to be stronger.”

This statement made me really angry, because after all I’ve been through, I feel entitled to be weak for a minute. I feel like I deserve to be allowed to fall apart. The truth is, he was right. I have no one that will pick me up again so I AM going to have to be stronger. I am going to have to keep putting one foot in front of the other because there is no one else to do it for me. No one to share my burden.

This most recent series of posts that I’ve read and posted, has made me wonder if I have lost the purpose of this blog. When a Circus becomes a Horror Story perhaps its time for the Circus to close down.

That’s what I’m going to do.

I will not be taking the blog down. I will be reading and responding to comments, but I no longer think this is a positive means to express my feelings about my journey. I have decided I will try IVF again, but I have a lot of ugly to get through first. I think its best sorted out in private, so this will be my last post here.

I have found I really love writing, though I’m not terribly good at it,  and you will now be able to find me at The Luncheonette.

It’s still under construction, but I think it will be a more complete representation of who I am. I will be sharing a menu of my travels, photography, food, my husband and stepdaughter, things I think are funny or inspiring, books, music, movies, my observations of the world, and my immature shenanigans.

I want to thank the IF community for being kind to me, for supporting me and tolerating my sometimes controversial posts. For reading even when I’ve been a bitch or my posts have sucked. I know in my heart that the day will come for each of you when you hold your baby(s) in your arms and feel happier and more complete as women, and as part of families.  My email address is jlko@att.net if you want to stay in touch.

I hope it’s not goodbye, I hope it’s just so long, and I hope to see you at the lunch counter!

Jeanette

An American Horror Story

I can’t get warm. I live in Southern California,  and even though just about everywhere is colder than here, I can’t get warm.

I’ve spent the weekend waiting. Waiting to bleed, waiting to stop crying, waiting for something to feel normal or logical. I haven’t, started bleeding, I still cry easily though for shorter durations and thank god, usually in private. I’ve been waiting for the pregnancy symptoms to subside, they haven’t either. What has happened is that everything has begun to feel really surreal. Like it’s happening to someone else.

Saturday my husband spent the day with a client so I wandered around trying to do errands I wasn’t able to get to during the last few weeks when I’ve felt so ill, and tired. At some point I started to feel like I was so desperate and crazy that I couldn’t stand the idea of having a dead embryo inside me anymore. It was like some sort of surreal anxiety attack that just went on and on and felt bigger and bigger. I texted my acupuncturist on Saturday afternoon, to see if he could help me get the miscarriage started. He was shocked. He thought I was accusing him of hurting me. I wasn’t. I said “No, I want you to help me start bleeding”. He kept asking me over and over if it was true that there wasn’t any more hope, said there really wasn’t much he could do, got kind of annoyed with me that I haven’t seen him in 3 weeks (due to work, and just being overwhelmed with adjusting to being pregnant and the expectations my husband and family have of me) so I agreed to see him this afternoon. He says the best he can do is help calm me. I am not sure how well this appointment is going to go because I’m not sure anything except strong drugs will help calm me at this point.

I’ve dreamed about dead babies. The box the Dr gave me to collect a “sample” of the tissue has very graphic pictures of what is the right tissue to send and what is not the right tissue to send. Its like something about of a sick science experiment. It will need to be “collected” thoroughly washed, and placed into the sterile jar. A vial of the miscarriage blood must also be collected. once collected they are both to be wrapped in a “bio-hazard” bag, placed back into the box and sent to the lab. The box also says that while it can be used by a patient, it’s created specifically for the use of medial staff after conducting a d&c. No gloves come with it. So let me get this straight, I’m supposed to collect the sample from the toilet, wash it, identify it, and place it in a sterile jar? I’ve done a lot of things to become pregnant. I’ve gone through a lot but I don’t think I can do this. I don’t think I am brave enough to do this.

I woke up from a nightmare about doing this last night drenched in sweat, heart racing and shaking at 1:30am last night. I didn’t go back to sleep for a long time.

There is only a 50% chance that I will miscarry naturally. On Friday if I still haven’t started then I am to call the Dr who will give some vaginal suppositories that should bring it on. There is a possibility that also wont work so the Friday after that if I still haven’t miscarried, then he will tell me to get a d&c from my own Ob. I honestly don’t know if I can wait another 3 weeks for this to be over.

Overwhelmingly, sharing my story on Facebook has been amazing. Except for a few comments like ” You know if you really want something it will happen, so you must not have wanted it enough” and a God is punishing you, I never really thought you were cut out to be a mother”.

Why is it that I can get 50 amazing, caring, supportive comments, and the 2 that aren’t just bring me to my knees?

So where am I now? I’m about to get ready to go to work, dizzy, light-headed, shaky, anxious and with tremendous back pain that started on Saturday. I’m about to step back into my life, feeling more disconnected then I’ve maybe ever felt, and wondering if this was my last chance at my own biological child.

I know I need to thank everyone for their wonderful comments and support, but please be patient with me, I am still in the thick of this and just putting on foot in front of the other is proving to be as much as I can do.

Uncertain

Its been a terrible week.

Time has crawled. I’ve gone over every single worst case scenario and I have no idea what comes next. If the pregnancy continues great, it means every week until week 16 will be terrifying. If it doesn’t, I am back literally at square one. I have nothing frozen, so I will starting from zero. If the embryo has died what happens then? D&C tomorrow? I have no idea.

I’ve continued my meds as requested. I’ve not bled at all. I sometimes feel more pregnant than others, and sometimes feel almost not pregnant except for sore boobs and the feeling like my uterus is full. Nausea has abated, I am still drinking a lot of water, I’m not really hungry, I’ve lost some more weight and according to Dr Google I may be experiencing something called a missed miscarriage. Or not.

Does anyone know if symptoms lesson if the embryo dies? One thing has changed this week, I can’t get through the day without a nap when I get home from work. Which means, I sleep for 2 hours and about 2 hours later go back to bed. That’s definitely new. I’m a bad sleeper on the best of days. In fact this morning I was awake at 4am. I don’t know if this means something, or if I just WANT it to mean something.

I did one brave thing this week. I came out on Facebook about my fertility struggles, and my IVF situation and mostly have had the most incredibly kind responses. In fact, on my blog this week I’ve had some unbelievably kind people leave comments that they have read for a long time, never commented before and are rooting for me. Its been amazing, and its made me cry more than once. Thank you to everyone that took the time to write to me and to say you’re hoping for me. Its appreciated since I’m not sure I have it in me now to hope for myself.

I only have a few family members on Facebook and of them, only one said anything about my news. My brothers daughter, my 21-year-old niece. I didn’t hear a word from my younger brother or his wife, so I guess it says a lot about who you can count on and who you can’t.

One thing I have noticed, is that some of my friends who are now pregnant via IVF (in person real life friends) have suddenly dropped off the face of the earth, like miscarriages are catching. That’s been…upsetting.

Overwhelmingly this week has been lonely. Hopefully tomorrow I will know, and this horrible limbo will be over.

 

 

Secret

How many of you are on Facebook? How many of you need more than the blogging community to vent, discuss, complain, cry, and have people who completely understand what you are going through to talk to, even if they are virtual strangers?

I have started an IVF Peer Support group on Facebook. It’s a “secret” group meaning no one but the people in the group ever see the posts, and it doesn’t show up in anyone’s feed unless they also belong to the group. I can guarantee your privacy.
Anyone who is dealing with infertility is welcome. From whatever stage you are in, you don’t have to be doing IVF, from first diagnosis, to starting Clomid or whatever, doing IUI‘s, IVF, anyone with autoimmune issues, anyone facing issues with fertility, including those of you that are now pregnant.

There is an embryologist in the group, and a nurse, so there are times that you can get your questions answered straight away. I will invite the RE from my clinic from time to time, to answer questions if there is anything that is really urgent and pressing.

The purpose is to get advice, share experiences and stories, give and get support, make friends, and have someone rooting for you, no matter what.

I’d like to open it to this community. If you’d like to join please contact me at jlko@att.net. I’m happy to answer any questions you might have. If you are uncomfortable with it, I understand, but I hope you will at least consider it. Lastly I do not work for nor am I compensated by my clinic, I started the group because as its well documented here, I just don’t have enough support at home.

The group is small now only about 8 people, but I’m hoping it will grow. I just wanted to offer, because crappy as my day has been, I’m determined to find a silver lining. And this might be it.

The Best Laid Plans, Never get Laid

This is actually the title of a song by “The Bears”  from a CD called  Rise and Shine who are mostly member of King Crimson from the 80’s. Admit it, none of you have any idea who I’m talking about….

My plan has worked well this last few weeks. I’ve felt genuinely peaceful and content for at least 10 days in a row.

Until last night when the husband lost his shit over me getting him a new iPhone 5. Everyone Anyone else would be like… “YAY!” but he was all “OMG I hate technology, I hate this thing, nothing is where I left it and its all your fault”

Whut? Normal husbands would be like..”OMG you are the best wife ever, you ever transferred everything over and set it up for me how can I be a better spouse to you?” Also, I didn’t get one for me. I just got one for him because he hasn’t had an upgrade to his phone in 3 years.

Nope! None of that here. Instead he texted me, and then called me and yelled at me for an hour until I solved his problem and then he was all…”Whoa you are like the iPhone whisperer”

SERIOUSLY? seriously?

Please visualize those two words being said with 2 HUGE eyes, A pale blue face, racing heartbeat,  high blood pressure and a look of complete disbelief. Assuming you know what my face looks like.

I don’t respond to stress like a maniac! Also I may or may not have mentioned he’s not technology er… savvy. Which is the nice way of saying he’s a moron when it comes to every single thing that makes sense to me in this world. I *might* have just projected a lil anger onto him, but come ON! Most people would pee on themselves to get the newest best model Apple product.

Plus I stayed up until 2am to order it for him so he’d better step off! Lastly, he asked for it. He denied it last night, but he asked for the new one because of its larger screen. Aside from perfection, nice paintings, old expensive architectural books and perfect grades from both me and stepdaughter this man doesn’t ask for anything for himself. So when he does. I listen.

I also know his limitations and his tolerances so I (wrongly) thought that me transferring everything over, and handing a new phone completely synched and working with all his favorite apps in the right order would be enough.

Next time, I will just buy one for myself and call it a day.
I had meetings this morning, acupuncture this afternoon and the radio show Facebook thingy I host tonight.

Then I will meditate on my single follicle and tell it to behave itself and to do its job. Tonight, my weird retrieval cleaning and routine. I admit it, I’m slightly OCD about the retrieval thing.

Tomorrow, If I haven’t ovulated the little effer early, the first dominant follicle from my sad little left ovary ever.

The Bears Http://www.youtube.com/watch?v=iLtWj4S3Vy8

Insulation vs. Isolation

 

Today was my Endometrial Biopsy. It went well, I got nervous driving over and my heart was racing by the time I walked in the door. It hurt. About the same amount as an egg retrieval does but it was bearable and I didn’t cry or make any noise during it. I’m not sure I was breathing though, and when Dr. asked “You ok?” I squeaked “yes”. It went fine. Finish Estrace and Provera, wait for shark week, and we will see you on day 2 or 3 at which point we will decide what to do next. I will be ready.

I’ve made a new plan. Because planning for things I can’t control is super useful. Not it’s not actually groundhog day, I have said that before. But before you tune out, this plan is different. This one is stuff I actually CAN control. Imagine that? Me getting smarter over time. I’m shocked at myself really.

Isolation is what I do when I’m miserable. Go off like a wounded animal to lick my wounds in private. Or you know, die. It’s not good. It’s really not healthy as I have done such an exceptional job of demonstrating over the last few weeks.

i·so·la·tion [ahy-suh-ley-shuhn, is-uh-] noun

1. an act or instance of isolating.
2. the state of being isolated.
3.the complete separation from others of a person suffering from contagious or infectious disease; quarantine.
4. the separation of a nation from other nations by isolationism.
5. Psychoanalysis . a process whereby an idea or memory is divested of its emotional component.

I’ve decided to keep working on my support system, try to nourish and grow those friendships, focus on myself and actually be selfish. *Yes. Dr Paul, I know you’ve told me this for almost a year, but I am stubborn and have a thick skull, doy.* Also I’m 9 and still use words like “doy” in fact, I think we need to bring it back.

The growing the friendships and support system part is Part I. Part II is: I’m  going to start insulating myself from things that add additional stress to my life in general. My husband and I talked about it again and he said he’s willing to help try to support me better. I’m getting rid of a lot of eejits from Facebook, avoiding things and people who upset me, and trying again to think pretty pink positive thoughts.

You have to give me credit for persistence, effort and tenaciousness. I keep trying.

Insulating yourself from negative influences, or things that influence you negatively isn’t a bad thing. Right? I mean I’m not saying I’m going to avoid my life, but I am going to stop trying to take on, or responsibility for every single thing alone, and I am going to try to stop isolating myself when I’m feeling particularly dark. It’s new for me, I’m not good at asking for help, but if I have learned anything in the last month, it’s that I am sure I will make mistakes, and its a step in the right direction.

I will decide when this is too much for me. I am still here, a little bruised and shaky, hoping to dust myself off and keep fighting toward my ultimate goal. A family of my own.

I heard this song last year once, and last night again. Its beautiful. And peaceful.

 

Controversy

I hate the term “bump” and wish we, as an English-speaking people would strike it from our lexicon. While I’m at it I also hate the term “hubby”, “preggo” and “fur baby” and many others. I have dogs. I love them. They are not my babies. I also have a husband who I also love, and if I ever call him hubby please feel free to punch me in the face. I am not now nor will I ever be “preggo”. Because it’s a freaking canned spaghetti sauce for the love of all that is holy.

I’m probably a little raw to be writing this today but I’m in a fuck it mood.

There are things about the online IF community that really bother me.

1. That some of you call yourselves infertile because you started trying 6 months ago and weren’t pregnant in the first month you wanted to be. The definition of infertility does not include you. I’m sorry.

2. That people have such a fit over pregnancy announcements. Yes it hurts. Quit bitching about it. Everyone else’s lives should be put on hold because you are having trouble conceiving? Get over yourselves.

On a kinder note, how can you possibly expect to have a grace bestowed upon you when you resent or have envy at someone else? I do not understand this thinking. Yes, it stings. Sometimes I have flashes of jealousy but actually letting it ruin my day? No. Its past time we put on our big girl panties take it on the chin and actually open our hearts to the new life they are beginning, weather or not we perceive them or judge them as deserving. If it’s really that awful for you, terminate your Facebook account and don’t look back. Become a hermit, let it define you, lay down and get comfortable in your misery. Actually don’t do any of those things, take your power back. Don’t let some unknowing person take your strength or your compassion for others.

3. That people avoid the mall because they don’t want to see other pregnant women. See bullet two.

I know that this post does not show the compassion or empathy that some of you deserve. I know it does not change how long some of you have been trying. But here’s the real truth. Most of you are barely in your 30’s or are in your early 30’s. You have at least another 10 years to keep trying. Trust me when I tell you as a 44-year-old woman, my time is fucking short. This isn’t what I wanted for myself, it isn’t ever where I thought Id wind up. But it’s where I’m at. Every month I face some new ugly surprise that makes continuing down this path scarier and scarier. Every month that’s failed costs me roughly 3k plus, and that doesn’t include meds. I have 2 blasts, that it’s taken me 7 months to make. The truth is I need 5-6 so that I can PGD testing them to make sure there are no chromosomal abnormalities. Statistically, the chances are of the 5 or 6 that are tested, maybe 1 will be normal or maybe none. If there is 1 that is normal and transferred, there is no guarantee that will become a live birth. Stare that in the face for a while. Because those are the cold hard facts of my situation.

My other choice is to carry on. To keep trying, to try to make light where I can, because no matter how this ends, it will not define my life or who I am as a person.

I didn’t want to be an old mom, but if I am given the opportunity to be one, I will be. People say… “well just adopt then”.. only no one wants to give a child to a family where there is someone who is over 50. My husband will be 50 in October. So that’s out. Fostering? Same thing.

This is my only option, aside from Donor Eggs which will mean having to find someone, and it costing another 30k. It’s still on the table but its a last resort for me.

I do not have the ebb and flow of even normal IVF cycles. I do not have the comfort of the same thing happening month after month.

I read so much misery and despair in your blogs. I see so many women sad and getting used to that misery. I want you to want better for yourselves. I want you to open yourselves to the grace of being happy for others who are receiving the gift you want so much.

In my 20’s I miscarried at 5 months. I know about loss. In hindsight though I was married at the time to an abusive alcoholic so it was probably the best thing for all of us. But it took me 2 years to get past it. And every year on the date of my miscarriage I count its age and wonder what that child would have been like and how different my life would have been.

I can’t change any of this. I can’t wish for things to be different, for me to be younger, for my life to have turned out differently, because it won’t. This is my reality. Its hard. In fact its the hardest thing I’ve ever done. Some of you have called me brave. I’m not. I’m terrified, I am scared out of my wits. To be completely honest after yesterday appointment, I did some writing on a project I hope will turn into a new job, talked to a friend for a few minutes and went to bed. At 7pm. When my husband got home around 9:30, I was still awake, but I didn’t talk to him about it, I just lay there with the covers over my head and tried not to think. Tried to numb the overwhelming feelings of fear. I eventually went to sleep, but “brave?” no.

When I got up this morning, I hoped Id feel better. I don’t. I’m still scared, still afraid. Still don’t know what is going to happen this cycle or next or the one after that. What I do know is I will face it, keep trying to move forward, fight my tendencies to isolate and keep trying. With or without children I am determined to try to find a way to make my life meaningful.

If I have alienated you I am sorry. it’s not my intention. There are times though with the points of view in this community are very one-sided, and I think for the sake of an open honest discussion you have to hear both sides.

If you take issue with anything I’ve said here please feel free to comment. I welcome opposing opinions and challenging questions.

And thank you for taking the time to read my ranty post.