Saturday, December 08, 2007

The reluctant post

This post is the longest one I've ever posted, and it's taken me weeks to write it. So go to the bathroom, and then get a snack, THEN read it, please.

Two bad things happened day before yesterday, first, I left a comment on someone's blog and accidentally put in their husband's real name instead of his pseudonym, and they deleted the comment of course, and I understood completely. I'm still mortified I made such a mistake. I'd be upset if this happened to me on my blog. Then, second thing, I had an online chat with someone and said something incredibly rude and inappropriate. Both times my intent was good, I was trying to communicate my thoughts, but my implementation was terrible.

I wasn't going to blog about this subject at all, but I can't stand people thinking I'm trying to hurt them, so I have to explain what's going on. I'd rather be humiliated and judged, even hated than be thought of as unkind to people I care about.

The judging by the way, will not be outwardly, but quietly, there will be fewer clicks, there will be fewer subscribers, there will be a general sort of----lack of respect that will follow. Like, hey, "we don't think Aurelia really belongs in the club now", you know, The Club of Women who will Make ANY sacrifice, even their sanity, to have a Healthy Live Baby. Or maybe there will even be a few people who might think I belong in the group called, Women who did something suspect, something WE would never ever do, and that's why she has dead babies.

I get the judgment, because when it comes to infertility and loss, there MUST have been something I did wrong, and if I was just a little more perfect, my babies would've been alive, right? All throughout my life, I have blamed myself quite thoroughly for all that bad things that have happened to me, something a lot of women do to themselves, I think. I'm trying not to do that anymore, it's not helpful to me, I know. But I can't control what you think, and I don't want to beg you all to like me, something I know I could do in a flash.

Sooooo, right here, right now, I'm giving you permission to walk away, no issues. If you don't understand what I'm about to write, or you don't get it, feel free to ask questions, wonder out loud, or even link to me and call me a fucking ungrateful bitch. (Okay, I will shrink in internal agony if you do that, but you still can do it.)

And no I'm not fishing for love and compliments and comments. I swear.

Breathe deep.....

A couple of weeks ago at Motherisk, I had a two hour meeting in person with a couple of experts on medications in pregnancy, and what they do and what they mean, and what all the medications I have taken will mean for this pregnancy.

Including Adderall and Dexedrine.

For my ADD.

You know, that imaginary disease du jour, one that causes me a lot of problems, like car accidents, and falling and breaking bones, and choking on food, and tripping, and getting lost, and mouthing off to people I like in completely inappropriate ways, and hey best of all? Mind-boggling, overwhelming, crippling, anxiety as I watch myself publicly fucking up every moment of my life, and know I am unable to stop myself.

Life was simpler all those years ago before diagnosis, when I thought I was stupid, or just a bad person. (Not happier, but simpler.) I just wrote myself off, blamed my obviously poor character, and kept living. Finding out I could've been helped all those years ago, and that my life didn't have to be shit, produced an overwhelming grief reaction for so long. Sadness at knowing that I wasn't really stupid, that I didn't have to a failure for so many years----oh I wanted to die for a long time. The memories of so many humiliating moments, so many missed opportunities, things I wish I could erase from my brain.

Knowing it's a disease, a neurological disorder and that there is a really effective medication can be a gift when the world accepts the treatment and embraces your "bravery". You know, like they do with some diseases of the body? The public still avoids sick people like the plague, but at least no one tells them their disease is made up and calls them drug addicts. Mental illness, much like infertility, gets the short end of the stick. Over the years, awareness is getting a tiny bit better for both conditions.

But when it comes to treatment of mental conditions during pregnancy and infertility, it's the dark ages. We're all supposed to suck it up and cope.

Motherisk has done a lot of research over the years into antidepressants and pregnancy, and many of them are well studied and completely safe. (Go to the link for specifics, or call them directly), and as long as your doctor avoids the offensively out-of date and medically irrelevant FDA pregnancy categories from the US, most women who are depressed and need medication can get antidepressants.

But it doesn't work that way for ADD. Almost all the literature on stimulants relates to street drug users and people who used many different types of drugs mixed with alcohol, leading to the assumption that properly prescribed and dispensed ADD drugs were just as dangerous as the crap bought from a drug dealer mixed with drain cleaner and baking soda. It doesn't work that way because most people think ADD is no big deal and only an issue in the classroom, and they assume it can be left untreated in pregnant women. And so in 2003 and in 2004 I was told not to take it, because it would hurt the baby, and so I stopped the millisecond conception occurred.

And both times, my children died.

Since then, I have learned that almost everything I was ever told in the past by GPs and REs about the causes of pregnancy loss and infertility was medically inaccurate, poorly researched guesswork, a patchwork joke that proves no one gives a damn on this planet about women's health.

Motherisk isn't perfect, but it has better information than most sources. They have a worldwide consultation group on reproductive mental health with names listed here, of professionals all over the world who prescribe psychotropic medication for women in pregnancy. I have to admit, my eyebrows went up at the list, since I know some of my favorite bloggers go to hospitals where these doctors work.

This is the official stand of Motherisk on ADD drugs in pregnancy. My appointment was with the second doctor on the list of authors, we'll call him Dr.Two. In the article, I found it a bit offensive and disturbing that drug abusers were even mentioned, after all no-one discusses heroin addicts when a prescription for surgical morphine is written, sigh....but whatever, I've come to expect it. And at least the article mentions that there are too many confounding factors like alcohol use and dosage issues to include those drug abuse studies with any credibility.

The key for a good study is to find large groups of women who were perfectly healthy for all intents and took stimulants during pregnancy for whatever reason. Something unlikely to ever happen in an ethical world, right? Nope, surprise! In the 1950s, 60's and 70's it was quite common to prescribe dexadrine and dextroamphetamines to average pregnant women, so they wouldn't get FAT while having babies. Can you freakin' IMAGINE?!?! (If anyone is surprised by women having body issues, they just need to look to our history....fuck, the things the medical profession does to women....) They quote studies of 10,000 women total, but Dr.Two told me there were hundreds of thousands of women who took these medications, and never had malformations or a higher rate of miscarriage then the rest of the population. Only problem is that both the group on the drug and the control group drank plenty of martinis and smoked cigarettes, and the stats were not quite as well gathered as they are now. Many women had early miscarriages and never knew since there were no home pregnancy tests back then. They just assumed their period was late and never got any medical attention.

So Dr.Two was concerned that some of these women could've had early miscarriages but no one attributed them to the drug. We then had quite a lively discussion about how he was making assumptions he couldn't prove, and of course, I wanted to know how the women would've taken the drug before even going to the doctor and getting a scrip. See, back then, no one showed up at the OB's office for their first appointment until 3 months, and so unless they kept a few in their cupboard, they would not have had any to take. Hell, even if they did take some, anyone further along than 8-9 weeks pretty much needed a D&C after a miscarriage, since misoprostol didn't exist, and of course there would've been a record of what happened then, and it would've been counted.

We talked for about two hours, and discussed every symptom, every implication, every OCD, hyperfocused obsessed issue I could bring up. There is very little evidence on ritalin, except one study on narcoleptics (no malformations, no risk of problems) and no evidence on Strattera at all. (It's not a stimulant, but something chemically very different, so I'm not taking that at all.) Wellbutrin might be safe, but I don't like the study they did, and clonidine has the same issue. Besides Wellbutrin and clonidine don't work for ADD very well. Why bother to take something ineffective? Pointless....

So I have been on and off of my meds for the past 13.5 weeks. Various Doctors have lectured me, my husband has told me just to go off it and we'll cope, and I have been terrified to tell any of my friends I've even taken one pill. Somedays I take a 4 hour pill and other days I took an all day time release, but I'm trying not to take those too often, mostly because of guilt.

Except we're not coping and my family is falling apart, and I'm afraid to talk to my friends in real life for fear I'll say something wrong and they'll hate me. And yes, I'm afraid to comment or chat online when I'm off my meds. I can get the cleaning lady to come in more often, and we're hiring someone to help put up christmas lights, but no-one can replace me as a mother, and I really do a dramatically better job at momming when I'm on my meds. I'm stressed and anxious and I have no freakin' idea how I'm going to make it through another 6 months, never mind adding breastfeeding time.

You may wonder how I made it through my pregnancies with Kaz and Mac and Matthew? Pretty simple....I assumed I was simply insane due to hormones and probably even a bad mother. I spent loads of time in therapy trying to cope, all of it useless. I went through some postpartum depression after Kaz was born, mostly due to feeling helpless in the face of the overwhelming responsibility I felt.

In the end, I don't know what to do. I can't cope without the meds, and they are medically safe if I go by Motherisk's assessment.

But my husband will soon lose his mind or divorce me, my children will have been late for school every damn day this year, and I will have enough bloody broken bones to start an anatomy museum if I don't get myself together.

If nothing else though, I'm definitely going to stop comparing myself to those Fifties housefraus. Poor really did suck back then. I have officially learned why Martha Stewart is an unattainable goal.


  1. "fucking ungrateful bitch"

    NO ONE except a fucking stupid asshole is going to think that of you. It sucks that you even have to think of that.

    But you know already that I want you to go back on the meds. You don't need or deserve this guilt, ADD is not a made-up disease or a reflection of your character. You're a wonderful person and mother. It seems to me like you shouldn't go on like this.

    Much love to you.

  2. This sucks. I'm sorry. With all the evidence you have, it does sound like they are safe. Can you convince Mr. Cotta of this? I would try (haha) not to care about most others, but I think it would be a good support to have him behind you on this.
    Hugs to you.

  3. Oh, my dear, I had no idea that you were dealing with this and I am sorry. So very sorry.

    You have done your homework and researched and talked to professionals, now take the drugs. Perhaps a therapy session with your husband will bring him around.

    I occasionally have moments where I question the wiseness of taking my bipolar drugs. As you know, I went off the Depakote because there are so many well documented studies that prove it causes increased risk of neural tube defects. But, I am still on a Schedule C drug, Seroquel. The research is sketchy but my psychiatrist feels very confident about this one. I have chosen to trust her. The other day, we didn't get to the pharmacist on time to pick up a refill of Seroquel and so I went without that night. My experience the next day reaffirmed my faith that staying on the drug was the only right things to do.

    No more comparing yourself to 50's women. Take your meds, drag your husband into therapy, and keep writing. We love you so much. Your babies dies because life sucks, not because you do.

  4. long time reader, first time commenter...

    two years ago when my husband and i were ready to try for another baby i was on (the newer class) of SSRI's since my PTSD (crippling anxiety) from my the complicated delivery of my son a year earlier. I knew if i wanted to go through another pregnancy i would need to stay on the meds but i wasn't sure if it was safe and like u, met with a series of doctors who knew the latest research and could give me sound advice. and they said stay on the meds. and gave me their blessing. and i still had guilt, fear, all those things that make u crazy in the still of the night. so fast forward to two years later (still on the meds) and infertility stopping us from conceiving this time, i worry like crazy still. and i'm not even pregnant yet.

    i just wanted u to know i understand the guilt and the fear, and the never knowing if you are doing the right thing, but that's what makes us mothers and we can only do our best with what we are given. if life was perfect we wouldn't need to bear these decisions.

    so i say take your meds and get back to enjoying life again, for it is too short. and our children deserve it.

    much love to you.

  5. As someone who's taken SSRI's throughout her pregnancy, I totally think you should be on your meds. Pregnancy is already a nerve-wracking time for you - why should you add another problem to the mix? Besides, being extra klutzy during pregnancy is a lot more dangerous, no?

  6. I believe adult ADD is real. I have an in-law with this problem and that person has many of the same issues you described. And you are right, medication can help.

    You've done the research, you've been reassured. You are also so close to the 2nd trimester when the impact of drugs and toxins is potentially less. And your previous losses had OTHER underlying issues. So take your meds withOUT guilt (as best you can). As others suggested, maybe Mr. Cotta can talk with someone, or Dr. Two, to be reassured as well.

    Take care of yourself Aurelia, and the rest will fall into place. We all want you to be happy.

  7. Women who did something suspect, something WE would never ever do, and that's why she has dead babies.

    You know that's a bunch of crap said by people to make themselves feel help them feel some sense of justice and reason in the midst of a totally random and uncontrollable situation. You know that. So screw those people. Who cares what they think anyway?

    Do what you gotta do to make it through. That's all there is to it.

  8. you have to take care of yourself hon. It sounds like you have enough information to be reasonably sure that the meds will be relativly safe. Our culture likes to treat pregnant women like the slightest little thing will make them explode. FRankly, its gone a bit overboard. Take enough meds to control your symptoms. Your kids and your husband will thank you.

  9. None of us are going anywhere. Do what you need to do to be healthy.

  10. Aurelia - I think you should do what you need to do to take care of yourself. It sounds safe, and never mind what other people think. That doesn't matter anyway. It's hard for me to remember that - to remember that other peoples' opinions of me don't matter. In AA people say - what other people think of you is none of your business. Just don't worry about it. The people who care about you aren't going anywhere. I think it takes a lot of courage to talk about this - and I think you have a lot of strength. Trust yourself and take care of yourself. I think you are amazing!

  11. I can't understand why there's a question in your head - you need the drugs, and your source says they're okay. End of story. Take the drugs.

  12. I'm a long time follower who has never commented but I think I agree with most people have a family who relies on you and you have to do what you have to do.
    I too have ADD (though my symptoms don't sound as bad as yours) and have spent years trying to get a doctor to listen to me about it. I do have one now that put me on Wellbutrin to see if it would help. I'm not sure how much it is helping but I am thankful that someone finally listened and I didn't get the old "your an adult, you will have to learn to live with it someday without medication so I don't think we need to start any."

  13. Go back on your meds. If they have been proven safe during pregnancy, you NEED to take them. If yours aren't safe, look for an alternative. My family suffers with crippling anxiety and panic attacks. My sister recently gave birth and was on Pro*zac her entire pregnancy and it made a huge difference. i know it isn't the same but you both needed the medsto simply live. You need them.

  14. Aurelia, I personally don't know you, we've not chatted online or ever emailed each other. But I have read your blog for awhile. Since you became pregnant there has been a noticeable change in not just the tone of your posts, but the way they are organized. And that last part was something I'd actually wondered about a little bit. Tone always fluctuates with mood in writing. But the shift in writing style is unusual. A person's writing patterns don't tend to change greatly over short periods of time once you reach adulthood. Hearing about your struggles with the medications suddenly made everything click.

    I am bringing this up not to make you feel self conscious, but by way of saying that I believe you when you say this is a huge issue in your life, and not just a point of convenience/comfort.

    Sometimes there isn't a clearly definative answer from science on whether something is ultimately safe or not. Then we have to make risk assessments, and weigh pros and cons, and make our best guess. You have done all of that. Your best guess here is that going without the meds will be more detrimental to you and your family life than it will be helpful for the baby. I believe you on that.

    So do it. And I hope you feel at least a little better really soon.

  15. It seems as if you're acting responsibly by checking which meds are OK during pregnancy. Now start taking them, reclaim your life & have a happy & healthy pregnancy.

    Take care of yourself and of your family :-)

  16. A I have only seen the tip of the iceberg I know but you are a smart lady and you know what is right for you and your family.

    Everything you have written her is thoughtful and well researched. I don't know anyone else who puts so much though into these issues as you do.
    I am so SO SO sorry you feel like anyone would judge you for doing what is right for you and your family.

    The whole mom game is so fraught with judgement. There are moms who give me the feeling that I somehow deserve my daughter to be disabled because I did not terminate the pregnancy based on a risk that something was 'wrong'. Meanwhile they had all the same tests and the same information but were just luckier.

    There will always be others who do not know your situation. Please don't let that affect how you feel about yourself.

  17. I have no anecdotal experience to share regarding your meds, though I know on a significantly smaller scale the guilt of taking something that might adversely affect your pregnancy (you commented on that post about my anxiety over cold medications a number of months ago), and I feel for you on that front.

    It sounds like your confidence in Motherisk is high, and if you trust their recommendations, then take the meds. If you continue to stress about taking/not taking them, that has an effect on your baby too (the stress hormones do impact the baby). I don't say that to give you more about which to worry, I say it to make you aware that there are potential consequences the other way too. It's not a case of it being all good for the baby if you're not taking meds that you need.

  18. I echo everyone else's thoughts, do what it takes to be healthy. As for what anyone else thinks, to be honest who gives a flying fuck? Your body, your mind, your pregnancy - do what you need to do for you. x

  19. I'm so sorry that you have to struggle with this. The most concern that I would have is that the stim meds bring about a bigger strain to your heart in addition to your pregnancy.

    Are there any studies on caffeine?

    Wabi is right, I find your posts more scattered, which make then harder for me to read, because my mind starts to wander. I'm mentioning this, trying to be constructive, so your right in noticing your daily issues.

    On the flip side what would happen to you if you were given bed rest? Would you need more help around the house? In addition to the meds, would you and/or Mr. Cotta consider an extra help of hands?

    Now I'm feeling very guilty for not answering your email. Will get to it. It's starred with everything else that I've been meaning to do. So sorry.


  20. The whole thing is a matter of risk/benefit.

    Clearly, the benefit in this case, for ALL involved parties (even and perhaps especially the ones with umbilical cords) outweighs the negligible risk.

    When I talked to a peri about taking sleep aids because of my Manic Depression, he thought my initial reluctance to do so was a bit ridiculous. "YOU are the patient," he said. "We still have to take care of YOU while you're pregnant, and we can do that."

    Man's got a point.

  21. Aurelia, you do what you need to do and we will all still be here reading and supporting you every step of the way. I think you have sufficiently researched and the drugs are ok. Now I just want you to feel ok too.

  22. I went off my anti-anxiety meds before I got pregnant the second time. No meds, no caffeine, healthy foods, lots of rest, etc. Baby died. Stayed off pregnant again. More healthy foods, no meds, no caffeine. Baby died. Got pregnant with K after having gone back on anti-anxiety meds. Stayed on them. Took antibiotics the whole time I was pregnant with K because of a UTI that wouldn't go away. Drank more caffeine than I care to admit. Had healthy little K.

    You do what's right for you. I am just telling you that it's OK to take meds during pregnancy and it IS possible to do so and have a healthy little one at the end.

  23. You need to take care of yourself. I look at it this way-- you are going to worry either way, whether you take the drugs or not, and given the level of research available it looks like the drugs are pretty safe. So if you are going to worry either way, maybe you can worry but take the drugs and feel better?

  24. All medication in pregnancy - even the stuff that everyone agrees is super-safe, and on the other extreme those meds which are proven to be dicey - is about risks vs rewards. Hell, it even applies every time we get ourselves a cup of tea or light snack.

    The main thing is you've got a real and accurate picture of the risks on one side (they sound pretty theoretical) and the rewards on the other (which you've experienced). Then you and your doctor make your decision from there.


  25. I found this post difficult to read -- some of the previous commenters' noted something about this as well, although I know it may just be me, since the DHEA is doing crazy things to me.

    What I was able to glean from your post though, was that you have an illness, you need treatment, you've done your research, and you should be taking the medication.

    So, I think you should take the meds, for what my uneducated opinion is worth.

    You really don't need this added stress from the ADD along with all your other concerns for your pregnancy and family.

    So, I hope your husband and your doctors support you on this decision.

    xx hugs to you,

  26. i don't think i've ever read anyone being so hard on themselves.

    to be brutally clinical about this.... you need to prioritise your current children ahead of the unborn child. they're a certainty. they're here. they definitely need you well, sane and safe.

    to my disturbingly pragmatic mind...mothering beats gestating hands down.

    take the meds. you've been told you can. you certainly must. your kids need you to.

    you poor, poor possum. this really sucks. take care. t

  27. As for dead babies, sometimes babies just die. It is unfair, cruel, unjust, unexplained and fucked up. But, sometimes, no matter what you do, what doctor you see or what cocktail of meds you take, they die. It is the same with other medical issues. People die from things that should not be fatal. Bad shit happens, and there is nothing you can do to control it. It doesn't pick deserving people. Nothing you did or didn't do made your children die.

    As for the ADD meds, I think taking them is a safer thing for you to do than not taking them. If they keep you safer, then your baby is safer.

  28. you probably don't need one more voice telling you this, since so many smart ones are already, but take the meds. it sounds like you know it's the right thing. and it sounds like it's safe.

    and we're all here for you, and behind you, 100%.

  29. Late to the party [again], but yes my dear -- take your meds!
    I had noticed your uneven tone, but chalked it up to hormonal insanity of early pregnancy...

  30. Thank you for writing this post. I'm sitting here on the verge of tears of gratitude. I quit my depression/anxiety medication when Mr. W and I actively started TTC and I've been spiraling downward, since. Now you've given me hope that if I find the right doctor, and the right drug, than I can begin to find myself again. I was afraid that I was going to have to give up my dream of a child for my sanity. Thank you.

    I am so sorry that you've had to suffer. I know how horribly a mental disease can affect every aspect of your life. I hope that with your newfound knowledge you will be able to reason away the guilt. You are doing what is best for everyone! (((hugs)))

  31. Just popping in to agree with everyone else. You've checked the risks and you need the meds, so take them.

  32. If you need your meds (and you clearly do), take them. As Magpie says, end of story. And don't feel guilty. You've carefully balanced the negligible, or, more likely, non-existent costs agains the clear benefits.

    (I thought I'd already commented, but blogger must have eaten my comment)

  33. I have severe clinical depression, and I can NOT function without my anti-depressants. I tried, and it was ugly. When I talked to my OB, her mantra is "healthy moms make healthy babies" and she recommended that I stay on my medicine because of the very real risks of untreated depression. I am not healthy when I am off of my medicine, and neither are you.

    And fuck people who don't understand that.

    We are not taking drugs to maintain our girlish figures; we are taking medicine to function.

  34. That last post was me, MissedConceptions. ???