Last night was the end of a LONG day. It was around 9:45pm and I was standing backstage at a show I was hosting in the city. I leaned against the wall, closed my eyes and started to think about how happy I’d be the instant I got home, took off my heels, control top pantyhose and the bra that makes my boobs look fabulous, but at this point in the day, were slowly strangling me. Beauty and comfort don’t seem to go hand in hand, do they?
In addition to dreaming about putting on sweats and never taking them off again, my mind wandered to what I’d eat for dinner that night. When you’ve been dieting for a while, fantasies are no longer about winning the lottery or having sexual relations with your favorite hot actor. They are about food. Last night, I was picturing cheese cake. What toppings I’d put on it. Would I eat it plain? Would it be American or Italian style? Oh, the things I’d do to that cheese cake! “You like that cheesecake? I bet you do…”
When I got to the part of showing my imagined dessert who was boss, I was interrupted by the next performer reminding me that I needed to bring him onstage in a few minutes. My imaginary cheesecake quickly morphed into a plate of grilled vegetables. Dammit.
“Any big plans this weekend?”, he asked.
I almost told him that I was going to start estrogen priming on Mother’s Day for my third IVF but as I studied this 21-year-old hipster who had a t-shirt on that read, “I’m not a proctologist but I know an asshole when I see one!”, I was pretty certain he wouldn’t appreciate my plight nor the irony that I would begin estrogen priming on Mother’s Day so I responded with a simple “Not really.”
He then went on to give me what felt like a four hour dissertation on his weekend. I sensed he asked me about my weekend solely so he could tell me about his. Eventually, he got to how he was sending his mom flowers for mother’s day. As he blabbering on about how pissed he was about how much money it cost, I thought to myself how great it would be if we had a “Mother-in-Law’s Day” where instead of sending flowers, we sent poison ivy.
As I pictured my mother-in-law scratching her hands and smiling to myself, Mr. Hipster asked me, “So… are you a mother?”
I was in no mood for this question and without much though, I responded with a snarky, “Does a funny mother fucker count?”
He chuckled briefly and then stared at me with a confused and somewhat afraid expression. I’ve been getting this look a lot lately.
Last month, I saw an interview with Oprah on the OWN channel where she talks about the universe trying to communicate things to you. She says it starts as a whisper and the more you ignore it, the louder it gets. I turned to my husband and asked him, “What do you think the universe is trying to tell you?”
“The universe is telling me to change the channel. The game is on.” he answered.
Now although I don’t know if I completely agree with Oprah’s theory (lord knows my husband doesn’t), I do feel like I may have recently experienced the point she was trying to make.
In the last year of our trying to conceive, I’ve heard stories here and there about the effect autoimmune diseases have had on women trying to get pregnant or various anecdotes of women who have done multiple in vitros and then after the third, fourth or fifth one, they finally get a test that explains what the issue has been this whole time.
It’s because of this that every doctor I’ve gone to, I’ve asked if they could do autoimmune testing and every single doctor has said they don’t think it’s relevant and/or that they don’t “believe” in it. This cracks me up. I realize that finding something may not always help or that data on autoimmune diseases may be up for debate but to totally not believe in it? It’s not Santa Claus people. It’s a blood test for crying out loud. If you can test for something, then it exists.
So, what seemingly started as a whisper, in the last couple of months especially, became louder and louder. I started hearing more and more stories on this subject. Several found out they had a blood clotting disorders well into their trying to conceive efforts. Others found out that they had an autoimmune issue that created implantation problems. A few found out through a laparoscopy that showed one thing or another standing in the way of conceiving. I was reading about it on Twitter, on other people’s blogs, in emails I was receiving and in people I was talking to.
In fact, this past Thursday night, the night before I hosted the show that wouldn’t end, my acupuncturist told me a story about a client of hers that had done five in vitros and who was about to do her sixth when she went to a doctor who did autoimmune testing. Previously, she had gotten pregnant three times through IVF but they all ended in miscarriages. When her recent blood work came back, they found out that her body was attacking any of the embryos they would transfer so they addressed the problem; she ended up getting pregnant naturally and is due in two months.
After acupuncture, I headed home and started thinking about this story. I thought about how they still don’t know why I haven’t gotten pregnant. That there aren’t even any real concrete theories. I started to think about how much I’m not looking forward to this third in vitro. That the term “estrogen priming” sounds like something you do with a pump and that Mother’s Day was this weekend and the thought of it was almost too much to bear.
Then, in the middle of the night, something happened that I can’t remember ever happening to me. I was dreaming about one thing or another (probably another kind of dessert I wish I could eat) when I woke up in a panic. It was like my subconscious was screaming at me. “Jay! You’ve GOT to get more blood work! Insist on getting these tests! Do it now! NOW!”
I’ve been known to worry. I can even obsess if I’ve got the time but this was different. This didn’t feel like I was scaring myself needlessly. This felt like I couldn’t be comfortable proceeding with this next in vitro without having additional tests done. Actually, it was stronger than that. It felt like my body was yelling at me that if I didn’t get this done, this next in vitro would be sure to fail. Obviously, this may not be true at all… but that’s not how it felt. I was a woman possessed.
I sat and stared at the clock waiting for it to be 9am. As soon as it was, I immediately called my clinic and left the following voice mail, “I know my doctor doesn’t feel autoimmune testing is necessary but I want it done. I also want any tests for blood clotting disorders. I’m about to spend my entire savings on this in vitro and I need to make sure we are covering all our bases. I don’t care how much it costs or when we do it, I want it done. Thank you very much.” Short of asking for a pony, a hug, and a slice of coffee cake, my message was clear: I wasn’t taking no for an answer.
I’m happy to report that at 1pm yesterday, I got all the blood work I requested. I also got that same look that Mr. Hipster ended up giving me later that night but frankly, I don’t give a shit. I don’t care if the whole clinic thinks I’m crazy. I had to have this done. I just had to.
Even though the rest of the day, I felt like crap (they took A LOT of blood), even though I did an entire show with a big ugly bruise on my right arm from where they drew the blood, even though these tests may not show anything, even though they are still more tests I could and maybe should do and even though this third in vitro may be the death of me, I’m still relieved I got them done as it’s that much more we can cross off the “Why the fuck can Jay not get pregnant?” list. And if they DO come back with something, anything that might help, then I’ll be that much more insanely relieved.
After the show, I was on the subway home and thought about the “Are you a mother?” question. I thought of a few more colorful answers like, “I’m a fairy godmother” or “I am a mother but I just don’t have kids yet.” or “Isn’t obvious? I’m a sexy mother fucker! Awww, yeah!” and then, out of nowhere, I had a thought that’s a tad silly but it brought me comfort.
I thought that, in a way, by insisting I get these tests done, I was my own mother. Of course, I have a mom. One that thinks I’m cursed (thanks mom!) but one who I’m close with and love dearly. Still though, right now, I’m mothering myself. I’m looking out for my best interest. I’m making sure that I’m getting the attention I feel I need. Hell, I’ll even give myself milk & cookies on the days that I need it! With regards to my fertility issues, I am my own mom and that’s actually kind of nice.
One quick final note, if you’re someone who is struggling with infertility, I wrote an “Infertility Contract” for the Fertility Authority this past week. It’s a contract you make with yourself in an effort to keep yourself sane during this insane time and I recommend you check it out: http://www.fertilityauthority.com/blogger/jay-bronte/2011/05/03/infertility-contract
And of course, if you’re someone who is a mom or soon to be a mom, then I truly wish you a very happy mother’s day. I am living vicariously through you and hope that you’re good fortune will rub off on us all!
I love this. And you, you sexy motherf*cker. It makes me so happy to hear about women standing up for themselves in this fertility struggle. I am relatively new to this whole thing, but I hope that when the time FINALLY arrives for my RE appointment that I am half as ballsy as you in asking for what I want.
Bravo, lady. Bravo. 🙂
Yay for getting those blood tests done! If they tell you nothing, you've still gained peace of mind, and if they tell you something….well, then you'll know what to do.
I think that Mother's Day belongs to everyone who is a mother or *trying* to be a mother. So Happy Mother's Day to you, too!
That's so awesome that you stood up form your self. I did a similar thing when I insisted on my hysteroscopy. My RE didn't think it was necessary, but then was really glad we did it because she found some scar tissue that would have prevented implantation.
I hope you get some answers. But if you don't, at least you know you did everything you could to know you were in the spear for this IVF cycle!!!
Good luck!!
You are a funny mother fucker! And I absolutely love this post–I love the way you write, it's like you are talking to me! Also, the comment about sending poison ivy–holy balls that's funny…except I have a great MIL, I'd consider sending it to my wicked witch of a grandmother tho!
Great post, Jay. And good for you for insisting on the tests. If they show nothing, you'll have some reassurance, and if they turn up something, you'll be able to address it.
That's awesome. I am all for testing for any damn thing you can find. The idea of finding out when it is too late infuriates me!
Jay, I'm so glad you did this, and that you listened to what your body and mind were telling you. The picture of the sweet teddybear up top reminds me of something my own mother said to me many, many years ago about holding myself tight when I was feeling alone and being there for myself. It sounds kind of hokey, but when I think about it, and about our taking care of ourselves as a mother takes care of a child…it really touches me and male me realize how rarely I give myself that kind of love. Which is so sad. Anyway…this post is awesome, I love you, and tomorrow won't be easy, but we're all here together. <3
I'm so glad you were your own advocate and ran those tests! My new RE has completely different theories than my old one does, and I was able to get more testing done recently too. It's really put my mind at ease that I'm doing what I can. And you are a funny mother fucker, and to me, it counts. Good luck!
Jay,
I have been following your blog for quite some time and I enjoy it SO much! Although I have not gone through the same struggles as you, I feel for you and pray for you nightly. I don't know if thats something you want to hear but I do pray for you and all those women who have fertility issues, that you will soon be blessed with a bundle of your own. So glad you stood up for yourself and demanded those tests be done! Praying either way that they give you some peace of mind.
those same thoughts screamed at me before ivf. i had myself tested for everything and it's mother, bc there was no way i was spending money on ivf without some clear answers. dh thought i was a nut, but whatever!! the only thing that came back was that i'm homo for mthfr and a slight thyroid thing that now has me on synthroid. BUT … i'm convinced that i woulda had a miscarriage if i didn't find out about the mthfr, bc i'm on obscenely high doses of folic acid/b12/b6 as a result. and baby asprin. i'm glad you got tested and while i hope nothing is wrong with you, it would be a relief to know that there is something *minor* that can be addressed that will just *fix things*, yes?? xoxoxoxo.
So glad you insisted and stood up for yourself! Whether they come back showing something or not, at least it won't always make you wonder….
We did the autoimmune testing and my Nka's were mighty high making my protocol (and doctor) change. Hopefully this is the key 🙂
xo
Yay! I can't help but send a little more information to you! If your doctor does not believe in Reproductive Immunology then he probably won't order all of the appropriate tests or interpret them correctly or offer the right treatment.You must see a Reproductive Immunologist. I am a Reproductive Immunology consultant with a Ph.D. in Immunology and 2 daughters after using RI treatments. Please send me an email and I can tell you which doctors I recommend or even quickly review a list of the tests that your doctor ordered to let you know if it is complete. I hesitated to write this because I didn't want to make you feel bad….but I couldn't let you go on without letting you know that you need to work with a specialist. So send me an email or call me and I can send you in the right direction!
I had a heap done before this transfer because like you I wanted to cover my bases. I think I just scratched the surface. There is a lovely lady called Karen from conceivable solutions who has a phd in immunology who can help you explore further. I would love to see her but I live in Australia but she emailed me really helpful nformation you can take to your dr.
YES! Get some answers! Good for you! IF is a symptom of something going wrong. Why waste money on another IVF until you address the root of the problem?
I find it really odd that the clinicians were denying you quite simple investigations – especially if you are paying for them! After my first 6 failed IUIs I decided to test myself for anti-phospholipid syndrome and a few other things. Everything was of course totally normal, but it gave me peace of mind. We don't pay for lab tests here but any GP can order what they like. We do have a responsibility as gatekeepers to the limited health dollar, but I think ruling out an autoimmune problem in someone with infertility is very cost-effective and good practice. I know that sometimes we want a positive test result so that we have a "reason" for our problems, but I still hope that your's are all normal. Good luck!
I love this post, and the concept of being an awesome mother to yourself!!! This is great! I'm so proud of you for taking charge and insisting on the tests!
But I agree with the comment made by Karen above. I asked for a natural killer cell test from my regular RE. He obliged, and asked LabCorp to do a NK cell test, and it came back normal. I then had a consult with Dr. Sher of SIRM, and he explained that most labs test the number of NK cells, not the activation of those cells. Only a couple labs in the country does this. We arranged for someone to come to my house, they took my blood and mailed it to one of those labs, and it came back saying my NK cells were activated, which were treatable with intralipids. I know it's confusing, but something to think about. Email me at adventuresofalex@gmail.com if you'd like to talk further about this.
Love the contract you wrote! Every infertile should sign this!!!
Kudos to you for standing up and demanding what you need! I hope the tests give you the answers you need or at least give you some peace of mind.
Way to go! I love it when people stand up for themselves, even in the face of ridicule/eye rolls/etc. Fuck those nurses and doctors who don't think it's necessary. If it will make you feel even a tad bit more at ease with shilling out the dough for this next IVF, then it's worth it.
Good for you for demanding testing! After my 2nd m/c in 4 months my OB rattled off a bunch of things that could be wrong but when I asked about getting tested she said insurance doesn't cover it until you have a 3rd loss. Bullshit. I called my insurance & they said it would be covered. When I went back for my post-op visit my OB was so offended I was going to see an RE she wouldn't even sign my release form to send my records. Turns out I have hetero factor V leiden & PAI-1 clotting disorders. My RE put me on baby aspirin & foltx. I will need to be on blood thinners my entire pregnancy & 6 weeks postpartum & progesterone suppositories during the 1st trimester. I'm writing a nice fuck you letter to the OB's medical director.
Good for you and taking charge!
I am proud of you for demanding the testing you felt you needed. You are so right – you are handing over your life savings and you have every right to have all of the tests you feel that you need performed BEFORE you get to the point of no return – or lots of wasted time/money. That will give you time to take any additional meds that might give you a better chance of conceiving.
Jay,
3 months back when I went to my new RE, she ordered the immunology blood work…the ANA, AMA, TNF alpha, natural killer cells (sounds grave) etc tests and menstrual blood tests through a biopsy (Koch's Culture) for tuberculosis. God knows I was mad at her. My immunology tests came out fine, except for TNF, which was marginally high. The tuberculosis tests came out fine initially, but developed mycobacteria after 2 weeks. I then learnt, that the tuberculosis can make the TNF high, which in turn rejects the embryo, treating it like a tumor to be eradicated from the body. It is that inter-connected, and while it's important, the doctors can easily miss out on these extremely vital tests. I'm glad you're getting more blood work done. Cheers!
Good for you!! Imagine how vindicated you'll feel if the tests show there's actually some kind of issue. God only knows why a doctor wouldn't want to get these tests done before trying IVF, it just seems like common sense to me.
Love the potential responses to "are you a mother?" Fun post!