When Things Don’t Go To Plan

As many of us in the IF/RPL community know, our lives are not going to the plan we expected. Many of us have been forced to learn some very hard lessons about life.

We learn to shift our perspective.

We learn to change our expectations.

We learn to lower our standards (of ourselves and society).

We learn to find faith in places we didn’t expect (religion, science, etc.).

We learn to nurture our marriages.

We learn to live in stress.

We learn to speak a new language of acronyms.

We learn to throw out our life plan (car, marriage, house, baby, etc.).

We learn to live in cycles (2 and 4 week cycles). We all know the two week wait all too well. We all seem to know the feeling of not committing to something important because we don’t know where life will be in 2 months or 6 months.

But what many of us also do is rely on our medical professionals – Some of us now know more about creating babies and miscarrying babies then many family doctors. We become expects in a subject we never really thought we’d care about – progesterone levels, betas, immunology, IVF, clomid, etc. We expect that doctor’s should know more than us about our reproductive future – but some of us learn the hard way that doctors are not gods and rather they are imperfect and fallible.

I had a very good lesson in this last point last week. My RE and his clinic, whom I had generally liked up until this point, clearly indicated that they are not gods. They did this through horrible communication, and we clearly saw that they are not treating me as an individual, rather they are treating me as a standard RPL patient which they see very few of. I ask questions slightly outside of the norm, and the nurses just read form a list of standard answers. This is simply not okay.

Photo Source: Office.com Clip Art

Photo Source: Office.com Clip Art

Last week reminded me that as much as I’ve let go of my life plan, I am not prepared to be a passenger on a train running wildly into the night.  My doctors are there to support me, not to muzzle me. I am an active participant in my medical care and my future. While, I’m accepting that the end of this journey is beyond my control (i.e. will we have biological children or not), I will not accept that I have no say in the direction the train is running to get us there. I have a strong voice, and I will be much stronger from this point forward. I have to demand better of my current RE, and find a new one if he doesn’t step up. I am more than just a statistic. I deserve personal care. In fact, every single person experiencing RPL and infertility deserves the best personal care possible.

So, what I can assure you is that the next few weeks are going to be interesting and may result in a much different approach to our medical care:

  1. I’ll know in a day or two if we are pregnant this cycle. I honestly hope not, I just don’t think starting a pregnancy in the stress of last week is ideal. But, the deed was done, so it will be what it will be.
  2. October 1, we have skype initial consult with Dr. Bravernman. It’s free, my expectations are low, but it’s a great place to start.
  3. October 1, we have an appointment with our local immunologist to discuss his thoughts on seeking the knowledge of an RI.
  4. October 3, I have an appointment with my local RE (his nursing staff agreed to give me a cancellation appointment). We will be discussing the unacceptable treatment I received from his nurse. We will be discussing everything that happened with the progesterone last week and what his interpretation of the situation is. I will demand that from this point forward I use prometrium after ovulation, not once we test positive. We will be discussing his willingness to work with an RI out of country.

If you like this post, please feel free to share it and please return to myperfectbreakdown.com to follow my journey.

44 Comments on “When Things Don’t Go To Plan

  1. I love this post.. I loved the beginning because I could so relate to most, if not all of those. I also loved that you are your own advocate. That’s one thing I’ve learned through this whole thing. I didn’t always speak my mind, but I have been doing that since working with an RE and it’s the best. You’re right, we are partners in our care. We do have some sort of control in which direction that train is going. 🙂 I look forward to hearing about your consult with Dr. Bravernman too. Good luck in the upcoming weeks. 🙂

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    • Thanks so much! I am intrigued about our consult with Dr. Bravernman, and really interested to see what decisions we make over the next couple weeks. Right now, I’m honestly tempted just to book the testing with him and hop on a plane and get this underway. But, my husband isn’t so convinced yet, so we will take our time and make the best decision we can.
      Thanks again!

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  2. Gosh golly, I cannot believe how quickly the timing of your upcoming medical consultations came together. That’s good fortune (in relative/context-dependent terms – medical appointments are never good fortune in most circumstances, admittedly, but in the RPL/IF world, they can be!). You may like Dr. B now that I’ve dressed down first impressions of him so much for you! 😉 I would invite the guy to join my family for dinner in light of the compassion and patience he’s shown me after the rocky start, even if he can’t fix what’s wrong with me. I really hope the coming weeks bring some clarity for you two. It’s so great to see your confidence and self-assertion in the face of last week’s stress. Wishing you only good things to come, my friend.

    Liked by 1 person

    • Yes, all the medical appointments lining up seems to our good fortune – gosh, who knew I’d ever think of this as good fortune?
      Anyways, I have made sure to convey your feelings about Dr. B’s initial skype consult to my husband, so we both have pretty low expectations of the consult. But, I’ll make sure he reads this comment, to see how your perspective of him has shifted.
      I can honestly say, right now I’m tempted to cancel the consult and just book the testing appointment and flights to NYC. I know we wont, we’ll wait to make the educated decision, but somehow I feel like we are just going to end up doing this anyways, so why not get the show on the road?
      Thank you so much for your positive influence and support! I am so lucky to have you in my corner! 🙂

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      • Hilarious. That’s exactly what I did (paid after booking for free but before having free call). We had the free phone time anyway and I’m glad we didbecause although he seems totally distracted he actually did remember some of the things we had talked about. I am excited for you to get some answers.

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  3. One of the biggest lessons I’ve learned through IF is that we need to be constantly advocating for ourselves. There is a part of me that so wishes my doctors could “take the wheel.” But the truth is that its on us to make sure we get the kind of treatment we need.

    I’ve come to realize that I have no control of the outcome on my IF journey. All I can hope for is that at the end of the day, I believe that I’ve done the best I could. Which includes making sure I get the treatment I want.

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    • It is so frustrating that the doctors cannot take the wheel effectively. But you are so right, we have to make sure that we are okay at the end of the journey, knowing we did all we could do. I cannot imagine gong through all of this and still having a nagging doubt for the rest of my life – for us, that’s just not an option. 🙂

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  4. You are SO strong! You are your BEST advocate! This is so beautiful to see. I’m so glad you are firm and assertive and sharing your journey, therefore inspiring others to speak up and speak out on their behalf as well. I’m so glad you got the consult with Dr. Braverman. It’s a great step. Thinking of you and looking forward to hearing the outcomes. (((hugs)))

    Like

    • Thank you so much for your encouragement to continue to share this journey. I often say if I weren’t the one living through RPL, it’s a rather fascinating part of the medical system – I’m sure someone could do a PhD just on the emotional consequences of the journey!

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  5. Beautiful post!! I have definitely found my faith in the last few months, even DH has somewhat found faith.

    I’m sorry you had a bad experience with your RE!! I hope it works out. We had a bad experience with our first fertility clinic, and decided to get a 2nd opinion. I haven’t been to the clinic yet, but DH went last week, and loved it!

    Praying for you!! xo

    Like

    • So, awesome to hear that you new clinic seems awesome! I think it is so critical to find a doctor and a clinic that fits well with you.
      We are struggling with seeking a second RE clinic – for us, in Canada, this is our only clinic available locally, and if we move it becomes all out of pocket. And, we have decided if we move, we are moving to an RPL specialist, of which there are very few, and all located out of country. So, it’s going to be a very expensive endeavor to move. But, I think exploring our options is critical for us to know that we tried everything possible.

      Liked by 1 person

      • I’m in BC. It’s hard when we have so few specialists, and we have to wait for months for an appointment. I’m frustrated just thinking how long we’ve waited. Hope it works out for you!! xo

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      • So, you get it then! I am a strong advocate for the Canadian medical system, but it definitely has its flaws!
        We actually looked at going to BC and paying out of pocket, but were able to get in quick in our province (we were initially told to be prepared for a 1-2 year wait, and we got in within a few weeks).

        Liked by 1 person

  6. I have so much respect for you and your ability to step up and be your own advocate. I’m starting to realize that doctors aren’t as knowledgeable as I thought they were

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    • Thank you, and it’s been a long road for me to realize the same thing about doctors.
      Sometimes I kinda think the whole IF/RPL thing is just a giant guessing game played by doctors at the expense of our lives.

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  7. Good for you hon! I’m so glad you’re taking matters into your own hands. Praying you get some real answers soon and the customize care you deserve.

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  8. So much if this resonated with me. Thank you for posting and sharing. We have had to become an advocate for our own health and that unfortunately stems from situations like that one you described. Wishing you much success in your next steps.

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  9. You’ve expressed so many thoughts that have been running through my mind recently as well. I hope that you get some answers, and some relief. It’s really a terrible feeling to be carrying the weight of all of the RPL, and I hope you can unload some of it soon. I’m curious to see how things go with Braverman. Are you in Canada? If you seek treatment with them, how much will it cost you (I also stumbled upon his site, but there is no pricing information).

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    • First, thank you for your positive thoughts. I hope you too find some peace and relief in all of this.
      I am in Canada, so currently all our RE appointments are covered by our medical system. Our medications may not be, but that depends on the specific medication. If we change to a new RE out of our province, but still within the Country, we would be paying out of pocket. So, in our decision to start looking elsewhere, we decided that we needed to look beyond a normal RE, who in our opinions are experts in “normal” IF, the people who struggle to get pregnant, not RPL patients like us who have a unique set of circumstances. As RPL only effects 1% of couples, we have decided we have to find a doctor who specializes in RPL specifically. My analogy for this is that if I had colon cancer, I wouldn’t go to an expert in ovarian cancer. And, that’s essentially what we are doing right now. While RE’s are very knowledgeable, they are not the best when it comes to RPL, at least not in our experience.
      As for why Braverman, another blogger is already in the process with im, and I trust her opinion – she has written quite a bit about her experience so far including some information of costs (spiritbabycomehome). (She has given me a bit more info on costs offline, but I’m not sure that I am able to share it – but I can assure you he’s definitely not free like our current RE). Also, all of my independent research in the last week indicates that he’s the guy to go to for RPL. We are also investigating Dr. Kwak-Kim, but are leaning towards Dr. Braverman at the moment because he does the most extensive testing. Anyways, if you have any more questions let me know. I’ll definitely share what I learn over the next few weeks.

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      • I am in Canada too- Ontario, and am very frustrated with my RE for exactly the same reasons. He’s good with “regular infertility” that can be overcome with medicated attempts and IVF, but hasn’t been able to provide any insight into our RPL with my young-ish eggs. I will shoot you an email. Thanks for the info.

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  10. Sometimes they really forget we are human with all the emotions that go with infertility. I did end up leaving my first clinic (mind you after 5 transfers) as when I miscarried they were so intent on following protocol they were breaking my heart.

    How are you feeling? Do you think you are pregnant? I kind of feel you might be because you know you don’t want to be this month…..If you are though don’t lose hope just get on progesterone support asap. xx

    Like

    • I tested on Saturday and I wasn’t, but that was still a bit early, and if I ovulated late that would make it way to early. I’ll test again on Wednesday and stop my progesterone if I test negative then because that will be cd28 (my normal cycle length is 28-29 days). My gut says, I’m not. Or maybe that’s just wishful thinking because I don’t want to be after the whole progesterone mishap. Sometimes I feel like I could be, but then I suspect that’s just the effects of the progesterone supplements.
      As for if we are, I’ve decided that I wont worry about the progesterone stuff until I have no choice. I’ll cross that bridge when we get there.
      I’ll be sure to post something either way later this week once we know what the result is.

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  11. I am having such a hard time letting go of “my plan.” Obviously at this point it is shot, and hasn’t happened, so I’ve learned those hard lessons. I wish we never had to learn them. Nothing to do about it now.
    But I think it is wonderful that you have appointments coming up and you are taking the next steps and advocating for yourself. That’s so important.

    Like

  12. Pingback: It Makes Me Bitter | My Perfect Breakdown

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