Idiopathic and Still Searching for Answers

As of this past Tuesday, I’m off anticoagulants. I do not have an identifiable clotting disorder. This doesn’t mean that I don’t have some issue, or that it isn’t dependent on when I’m pregnant, but it does mean that I do not have to take rat poison (warfarin/Coumadin) or inject medicine made from porcine intestine mucousa (enoxaparin sulfate/Lovenox) for the rest of my life. Though I do have to take Lovenox if I’m anywhere near pregnancy.

This means that the final explanation of what happened to my son is idiopathic. Idiopathic is medicalese for “We don’t know.” This has actually been rough for me the past couple days, because it means that I will not find an explanation. I have some hypotheses that are unscientific, that mostly revolve around stuff that is correlated with PCOS. It took me years to get PCOS diagnosed, and I suspect now it’s “subclinical,” though I still have other symptoms, and other test results that are correlated with PCOS in other people. Estrogen can make the blood “thicker.” This is why combo BC pills are not recommended to people w/ a history of clots, smoking, etc. Pregnancy alone will make a person run the risk of clotting. I hope that the perinatologist fellow (as in fellowship) I visit in a few weeks is open to discussion of the PCOS. Women w/ PCOS have a higher rate of stillbirth than women without, from what I understand. I hope I can find a doc that’s willing to hear me out, and actually engage with the questions instead of dismissing them academically.

I wanted an explanation. I wonder if I had been diagnosed with a minor clotting issue, if that would have made me feel better?

I guess I’ve formulated what I believe to have happened.

1. I exercised too much. (Broke a sweat on the eliptical 3x/wk for 60 min, never mind that women do prenatal aerobics.)
2. I was too stressed/anxious.
3. I was obese. (My starting weight was just under the line between overweight/obese on the BMI).
4. I didn’t drink enough water.

I guess if there is a next time, I’ll avoid those things. Take walks instead of going on the elliptical, or going on the elliptical and not breaking a sweat. Even if what I was doing was within the normal, healthy range according to what I was reading. Maybe it wasn’t for me.

I don’t know what to do about the anxiety, I’m an anxious person. I get it from my mother. She knows that. She’s told me. I know that, it’s obvious.

The water part is hard, but water will help keep my blood the right consistency and also help flush out the hormones in my body.

I know that other women who are larger than me, more neurotic and stressed than me, with crappy diets and not drinking water still end up having healthy babies. Maybe it’s the fact that I exercised as well? Though I know that there are large women who exercise regularly, too. (I also have to remember that I’m now close to the “average American” in size. I forget that even though I count as obese on the BMI as I sit here, I also wear a size 14/16, which used to seem impossibly tiny to me. I wore 24/26 at my heaviest.) All that science can tell me is that I had a couple of risk factors that made an already very rare occurrence more likely. PCOS, anxiety and obesity. I can’t change the PCOS. I feel like I need a therapist to help with the anxiety, but I can’t find one. The obesity, I’m working on through Weight Watchers, and if all goes well, I’ll be to goal within 11 months, 6 months if I follow my first trend. (That’s 1-2 lbs/wk average.)

I also have to remember that this shit happens to other women who are in better shape. Also, that other women have PCOS who aren’t obese, who also have problems. I’ve known a couple of women with fertility issues who WERE NOT EVEN OVERWEIGHT.

I know that in the end, no matter what I choose to blame this on (did the placebo effect kill my son?), I will never know the true answer.

I really, really believe that PCOS has something to do with it. PCOS is so crazy, because I haven’t met one woman who has had the same issues as me, or who has had the same issues as someone else I know with PCOS. For me, I had the cysts and higher testosterone level, but that’s it – and after I lost weight, my testosterone levels went down to normal. I still get the dark hairs on my face, neck and chest that I have to pluck. My blood work last summer showed that my cholesterol had a few things that are correlated with other women with PCOS – low good cholesterol, higher bad cholesterol (within normal range) and high lipoprotein, which is not impacted by diet and considered purely genetic, only impacted by high niacin supplements.

I know this kind of shit can happen to women after successful, uneventful pregnancies. I guess for me, I don’t know if my body can do that. I still feel so betrayed by my body.

Lump of a Day

I can’t seem to admit it anywhere else, but I’m depressed and I’m having a lump of a day. I just want to curl up and stay in bed. I’m forcing myself to do stuff around the house, and will be going to the gym later.

Not much unlike my second-third trimester. My day is sleeping, eating, exercising, interneting and hoping for a better day tomorrow.

Tomorrow is my one year anniversary of the cycle that I got pregnant.

One year later – where have I gone?

Hormone Crazy

About a month after my stillbirth I started taking Norethindrone, a progestin-only contraceptive. It has a higher failure rate than the combination contraceptives, but it’s the only one that is available to me since I’ve had clotting problems. I mainly started taking it for the hope that it would lessen my bleeding and even things out a bit. It did, oh yes, it did.

It flattened my personality, my mood, my sexual interest, my ability to lose weight, and I was bleeding 1/4 oz/day for four months. When I had initially gone to my OBGYN to see if my bleeding was caused by the pills, she encouraged me to stay on them. I know that spotting can last for three months, so by the fourth month, I was SO done. Within one day of stopping the pills, my bleeding stopped. Within a week, my interest in sex AND ability to enjoy it went back to normal levels. I also started losing weight for the first time in months (I’ve been doing Weight Watchers, with NO PROGRESS until now!) Also, I started experiencing mood fluctuations. This is good and bad, but at least, better than feeling “meh” all the time.

I think that hormone contraception (also, for PMS and other stuff) is right out for me. I had every single side-effect that I could with this pill. I’m glad that I’m off of it. I just wish I had some better options for both contraception and keeping my periods regular/comfortable. Maybe the latter won’t be so much of an issue. To me, it just seems that messing with my hormones is bad business.

Changing Medications

Yesterday was a bit of a scary day. My hematologist changed my medications the day before, because it’s getting to be the end of my 6 month course of anticoagulants, and he wants to do some final tests to see if I actually have a clotting disorder. Some of those tests can’t be done until I’m off of warfarin (it interferes with the accuracy of the test.) So, I’m injecting Lovenox for the next two weeks. He had one day of overlap with the Lovenox and the warfarin, and OMG, for the first time since I started, I had a bleeding scare.

Not to go into TMI, but I was experiencing bleeding where, let’s put it frankly, you don’t normally bleed. The doctor assured me that this was nothing to worry about now, but if it continued another day, to give them a call. Thankfully, I haven’t had to call them, so I think it’s all OK – but it was still terrifying.

Also, today I had family in town and we went out to Snoqualmie Falls. I didn’t get to hike down to the water with them, though, because of the danger of injury. I’ll be so glad when I don’t have to worry about that!!

Here’s hoping that my next round of tests come up negative!! I don’t want to be on blood thinners for life!

Unmother Fashion

In the great pregnancy guide, From the Hips, they have a little guide on what kinda mama you want to look like. I think that the choices are something like Fashionista, Granola Hippy or Total Slob (not in those terms, necessarily.) My personal style has always been malleable, and I think that given that I’m a larger woman (size 16, and have been much larger), I’ve tried to be a fashionista, without the strappy heels, and I’ve tried to at least have a sense of fashion between other styles of casual comfort. What kind of mom was I preparing to be?

Of course, pragmatic. I didn’t want to be a slob, but I also didn’t want to look like it was 2pm and I was still in pajamas. (Pajamas, these are my shopping clothes!!) Being an unmother (which is a term I use solely for myself, btw), I had to figure out what my post-pregnancy, without-child fashion would be. Not being currently employed, I had a lot of options to choose from. Should I embrace my 20-something times with short, funky hair? Go for an Abercrombie prep-slob look? Grow my hair out long and natural in prep for eventual earthmama-hood? To say the least, my identity right now of being an unmother (given birth, but no living children) leaves me at a quandary for how I present myself to the outside world.

I don’t like spending credit on clothing I don’t technically need. I think many people have learned in this economy that you can’t just keep spending without having to pay it back. I do some clever shopping at Goodwill, and take advantage of a few deals here and there. Mostly, I am just trying to find hair/make-up options that make me feel put together. I think that clothing can become part of an identity, or vice versa. After all, why do people wear uniforms or traditional garb?

I’m sure that as time passes, I’ll find my way. In the meantime, today is a funky-shirt and skirt day.

Anxiety

There’s a bunch of things that might make me feel better. Like getting back to yoga. The gym. Moving more. Meditating. It’s so hard when it’s nearly 100 degrees outside. I guess I’m not a Bikram yoga type!

I’m changing medication starting today. I switch from warfarin to Lovenox for 2 weeks. At the end of the two weeks, I’m going to get my blood checked for a few more issues – including Protein C and Protein S deficiencies. The likelihood of me having something diagnosable seems to be waning. I’m anxious about doing the injections again because change scares me. Well, lots of things do.

I’m hoping that I’ll get over this mortality stuff sometime soon. It’s a drag. I feel stressed and pressured and scared. I just want to go back to the way it was… anxious, but hopeful about the future. Now I’m afraid I’ll die young like my dad.

A friend of mine has Stage IV cancer. We’re not close, but I’ve known him for awhile. He’s not doing well right now, and it scares me. It scares me because he’s young, this was so unexpected for him, and he’s got a wife and two young children. It’s hard not to be reflective on mortality. It’s so unfair!

As the temperature goes up, I think my anxiety goes up with it.

I miss my baby.

Shortest Sad Story Ever Written

“For sale: baby shoes, never worn.”

It’s credited to Ernest Hemingway.

To Soothe the Soul

When I was a child, I watched The Princess Bride over and over again. Well over 100 times, and enough times to know every word by heart (or at least, every word I could make out.) I was a grieving child. I had experienced a cluster of profound losses in a short period of time, and by the time I saw the Princess Bride, I think I understood the agonizing wail described as “my heart made that sound” as Inigo Montoya said, when his father was murdered.

My own wail rings in my ears from when I found out my baby died. That is the sound my heart makes. When I was a child, no adult could soothe my soul, but this movie knew how it felt better than I did.

Some days are easier than others, and I think since I’ve gotten so much better than I was months ago, the days when I’m not quite doing well, it stings. Unlike some women in my position that I’ve come across, I’ve found very little comfort in religion, despite my own renewed interest in the topic. I’m less concerned with the metaphysical and more concerned with what is right in front of me, and the road ahead.

One step at a time, one day at a time. It’s the best you can do in this scary, messed up world that is also abundant in joy. If only I could see it sometimes.

Anticoagulation Fun

It was almost 5 months ago that I was diagnosed with a Deep Vein Thrombosis. I was lucky that the clot was in my lower leg, meaning that it wasn’t as severe, and some docs say, least likely to cause a pulmonary embolism. I wanted to write a post just in case someone might find it useful. I’ve got one month to go on my warfarin therapy, which means I have about a month or so after that to get some blood tests done to find out what may be going on with me and my blood.

1. Vitamin K. I love leafy greens. I love them VERY VERY MUCH. I’d choose leafy greens over cupcakes almost any time. Consequently, having to avoid leafy greens has ended with more cupcakes in my diet. Thanks to Weight Watchers though, I haven’t gained any weight. YAY! To make up for some of my nutrition deficits, I’ve been taking Rainbow Light’s Just Once – Iron Free, which also doesn’t have Vitamin K. So far as I can tell, it’s the only multi I’ve found that specifically says it does not contain Vitamin K.

2. Anticoagulation Management. The day I switched from my local doctors office to an anticoagulation clinic was a happy day. Up until that point, I was getting regular stabs in my arm, and waiting 8 hours to hear my results for my dosage changes. The Anticoagulation Clinic allowed me to get my test results in 4 minutes. They were also super-informative, and always available by phone to answer my questions. Due to my anxiety about the stillbirth, my health, and being on anticoagulants, I had a lot of questions at first that my doctor’s office were tired of trying to answer. The pharmacists at the Anticoag Clinic are there for you. I recommend them whether your on a 3 month or lifetime course of anticoagulant therapy.

3. Shaving. If you’re only going to be on anticoagulants for 3-6 months, I recommend an inexpensive electric shaver, like the Conair Satiny Smooth Ladies’ Wet / Dry Rechargeable Shaver. I admit that it crapped out on me after about three months, but I felt that for the price point, it did what I wanted for the time period until I can use my old favorite Gillette Venus. If for some reason I need another electric shaver, I think I’ll go with the well-rated Panasonic Close Curves Pivot Action Ladies Shaving System. The price point is good, and may be worth a try.

4. Injury. I’ve definitely had to make some adjustments to keep myself safe. I think I drive a little safer, exercise caution more when crossing the street, and definitely watch my head when I get in the car. I’ve had a few nasty bruises on the knees, but for the most part, I’ve done rather well. It helps that my blood has been to the appropriate thickness/thinness (INR level) a majority of the time. It’s good to exercise caution anyway. I’m safer in the long term this way.

5. Booze. I like beer and wine now and then. Some people will tell you that alcohol is verboten while on blood thinners – but that’s not the whole story. One – two drinks (that means a serving, with one shot of hard liquor being one serving) is the max per day recommended. And really, people shouldn’t be drinking more than that anyway. It’s just not healthy. It does mean, though, that you can still go out with your friends for happy hour.

Of course, this is where talking to the people managing your anticoagulant therapy will be your best friend. You can learn a lot on the internet, but don’t drive yourself crazy! Talk to the people managing your care, and find a way that’s right for you!

Set Apart

Ever had that experience where you’re pretty sure there are other people out there like you, who know where you’re coming from – and then someone claims to totally get you, and you’re like, “No you don’t.”

I’m finding it hard to find kinship. I didn’t start out as an ordinary mother-to-be. I started out wanting to reject the status-quo, and be a mom like my mom, except better. I wanted to have a better chance to do right by my kid. My mom did the best with what she had, and I wanted to do better. I wanted to ease up on some of the smaller things (like prohibition of some toys due to them encouraging gender roles, etc.) but also draw some lines with behavior that I see becoming lax in some places (since when should a child always have their way? not say please and thank you?) I know that not every parent now-a-days has obnoxious children, but I do see them in large amounts, and in public places, it’s sometimes the norm.

Even though I didn’t want to be thought of as an acronym (SAHM) with my husband (DH) and a son (DS) – I signed up for those months to enter into that word, like it or not. I knew it would be hard to find my kinship liberal leaning, worldly, educated (school or self), pragmatists who knew what to sweat and what not. I was working on trying to find my place in my role as mother, and now I’m trying to find my place as an unmother – someone living in between worlds and roles.

I find it hard to come face to face with some moms. Maybe it’s jealousy, maybe it’s fear, I don’t know.

I might have been the last person my friend’s expected to go head-over-heels into the land of babies, and because of that, I now wonder, did I belong there in the first place.

I think about what could have been – should have been? – sometimes. Today it’s hard, because I don’t want this. I want a do-over. I want to remember what it was like to be me, before this. Some days are hard. I worry that the holidays, my birthday – so long as I am lucky to survive all this- if I can survive emotionally though that.

It’s rough. All I know is, I don’t want to be a woman defined by my losses. I want to get through this triumphant. I don’t want to be someone who people say when I die, “She led such a sad life.” I don’t want this to be sad. I don’t want my life to be a sad story. I want to overcome. I will not be defined by loss.