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Saturday, January 27, 2018

Why I don't go to the OB anymore

As the news of team doctor Larry Nassar's sentencing makes headlines and his victims are finally being heard, it makes me fearful of their futures as they potentially enter their childbearing years. How will they ever trust a doctor again to care for them?

Awhile back I visited my gastroenterologist for a yearly follow up, and the assistant taking my medical history gasped when I said I hadn't been to an OB since my eight-year-old was born. She asked me why and I'm not even sure I responded. A friend gasped when I told her the same thing, and that I hadn't had a mammogram despite being 43, and she said her doctor has been ordering them for her since she was 35 despite being low risk.

To the intake nurse who was shocked and probably thought I was being irresponsible with my health: do you really want to know why I haven't gone? How much time do you have?

My very first gynecologist when I was college-aged was nice, she took the time to answer my questions and explain procedures. She also treated one problem effectively; the other, not so much. Not much questioning going on, just creams and this that and the other that made it worse.

The second guy, more cream. A cream that basically makes it feel like you're lighting fire to your skin. Not even sure what he felt he could accomplish with that. When I relocated out of state and saw someone else, the nurse gasped audibly when I told her what he gave me and couldn't imagine why he did that.

Soon I would start having children. The next practice I was in involved a doctor who had only recently had his license reinstated, I found out later, because he had made inappropriate sexual remarks to a patient. He's also the same guy who inaccurately told me that my child was vertex, even though I knew he wasn't, and argued with me. This was probably a major turning point in my pregnancy because we could've likely attempted a version at this point (they never offered, not once). But no, he remained breech, undetected, until I was about 37 weeks. Another physician in the practice did an internal on me - which now I wonder was really her stripping my membranes despite my child not being in a head down position - and determined that he definitely was breech, which was confirmed by ultrasound two weeks prior to my delivery.

When I had the baby, the first thing I said when my primary OB checked on me in the hospital was, in a super groggy state, that "all my children would have to be born this way." How naive and uneducated I was, and he knew it, because he didn't correct me.

When I got pregnant with my second, I was still naive and uneducated. He presented me with a choice at my first appointment: have a repeat cesarean or try for a VBAC. What little I had heard about VBAC sounded dangerous, and I told him so, that I felt I would just have another cesarean because "that was safer." He didn't correct me.

When I was nearing delivery with my second, I had an epiphany. Not only was she not breech like her brother, but I was more informed in my delivery options and just pissed off enough to exercise them. I remember vividly the appointment where I told my husband he had to come with me to break the news to my physician, who would not be happy. As if he was my daddy or something. The doctor already had a bit of a nervous stammer and it came out even more during that appointment. My husband was not pleased and shortly after that expressed his outrage and hatred for the doctor, who literally told me "I have one patient on her fifth cesarean and she is doing fine" when I confronted him about why he was downplaying the risks of repeat cesarean and making VBAC sound so terrible. That was his idea of informed consent. In response to this mystery patient that probably didn't even exist, I said, "Well, I don't want that to be me."

One of the midwives in his practice, upon hearing my plans, said, "I do not want to be doing this." Whatever happened to those caring, supportive midwives I kept hearing about?

I finally left that practice at the beginning of my third pregnancy, when another midwife in the practice basically made it sound like it was "my choice" to go through with it, despite the possibility of catastrophe. In other words, my fault. I left there in tears and never went back. It was not my first horrible interaction with her.

The next physician's group employed no midwives. Just doctors who bullied, coerced and lied. The lead physician in the practice examined my "little problem" and immediately tested me for herpes, even though I knew it would be negative. It was. He also didn't tell me what he was doing it until he had literally torn a piece of my labia off and it was over. He billed my insurance, I'm sure, but never asked me for permission to do the test.

At one point during that pregnancy I felt there was one doctor in the practice I could trust. That trust quickly eroded when, during a particularly lengthy conversation, she was having a tough time getting me to give up my hopes of avoiding another cesarean and then admitted she herself had had three of them. And then billed me for a 'consultation,' despite not having told me of what she was doing and the fact that my insurance was supposed to cover my office visits in full. This same office had billed me one other time for observed swelling as being "outside the scope of pregnancy care," despite it being quite common in pregnancy, in summer, and especially after the patient is being forced to wait in the lobby for over an hour to be seen.

One doctor in the practice worked hard to get me to consent to a cesarean for high blood pressure a week before my due date. I really wanted my baby to come on his own, hopeful that it wouldn't be a surgical birth. I quickly refocused and hoped it wouldn't be a cesarean done by her, praying that she wasn't on call. She had already scared me into thinking he was big after taking almost no time to measure me properly, sending me for an ultrasound where the lovely technician basically told me very politely that my doctor was full of crap.

When I was admitted for observation, the same doctor called my room repeatedly to harass me. When I finally answered the phone after several tries, she angrily asked, "Do I have to come down there?" like I was a disobedient child.

A resident had been counseling me yet again on the dangers of VBAC and told me the rate of rupture was 10%. I cringed inside and found myself shriveling in fear, as if I couldn't possibly stand up to their tactics. I remember thinking to myself, if I am going to preach to countless women about being advocates for themselves and their babies, it needs to start with me. I then told him he had his decimal point in the wrong place.

This same practice also had at least one nurse on staff who was downright nasty, even making a negative comment about my baby after he'd been born. I don't even remember what she said, but knew it must've been bad if the old lady receptionist apologized on her behalf, embarrassed.

When I came back for my six week checkup, I felt off. Not depressed, but just blah. The physician blankly stared at me and asked, "Are you depressed?" "Not that I know of," I answered, but wasn't exactly sure what to tell him. He told me he was obligated to ask and then ordered bloodwork and went on his way. The blood work revealed that I had a thyroid problem, which he also didn't know anything about, and I went untreated for probably another 18 months.

So I haven't been back. It's been over eight years and I know I should go, but I'm terrified. Waiting to be asked, "why'd you wait so long?" and subjected to a battery of bullshit I probably don't need, same as before. Only now it's a new game to play: when can we schedule your mammogram? I hate to tell that friend who's doctor ordered them at age 35 - but that's not even evidence based care. So when you transition out of childbearing to perimenopause, you're basically trading one set of fears over bad care for another.

When my online friends would talk about having a close-knit relationship with their OB or midwife, who is caring and listens to them so well, I realize I have never had that, not once. That I can't relate to that on any level whatsoever and now have an overwhelming sense of needing to watch my back. As if navigating the waters of "birth outside the box" wasn't stressful enough, now you have to worry about menopause and cancer this and cancer that. Being subjected to the same crap time after time despite countless studies - some of which that are at least a dozen years old - that suggest it's not really the best way, but seemingly take decades to implement, all the while receiving gasps and stares because you're dangerous and irresponsible. It makes me want to punch the Susan Komen Foundation in the face.

So this is what I want to tell someone when they ask why I don't go. And there are millions of women who have had it much worse than I. I know there are good, caring and supportive care providers out there but as of yet, I just haven't found them. I'm hoping that Larry Nassar's victims will.

Tuesday, April 5, 2016

Cesarean Awareness Month: Check your emotions at the door

April is here again, and this year Consumer Reports magazine is doing a series of terrific, thought-provoking graphics on the rising cesarean rate. Aside from this being Cesarean Awareness Month, it's a great time to talk about it since the rate continues to rise, and especially as the nation is attempting to get single-payer healthcare off the ground.

However, this is also a topic that provokes a lot of emotion in people; that's understandable. As someone who has had two cesareans herself, it still makes me bitter to think about decisions I could've made differently, ways I trusted my doctor when I shouldn't have, and just how I could've managed my care better throughout the whole process. When I start going down that road, though, I realize a couple things: none of it matters anymore since I can't change it; my choices have led me on a complicated, sometimes stressful journey to this point; and I can direct my energy into advocating for women and educating people about the subject.

Ultimately we as women have to put those emotions aside when we examine raw data that leads us to one conclusion: the cesarean rate is too damned high. All kidding aside, it continues to put moms and babies at risk, sometimes in ways that are clearly apparent from the onset, and sometimes far into the future. How can we change things? By looking at the data, being open-minded about statistics and what they mean, attempting to understand why it's not necessarily a good thing and what can be done about it. Freaking out and attacking people, or feeling like you've been attacked when you clearly haven't, doesn't really fit into that equation.

Case in point: today on FaceBook CR shared this graphic.

Source: Consumer Reports FaceBook page

Right off the bat, the first comment mentioned something we've all heard before: My child and I would've died had we not had a cesarean, and it doesn't make me any less of a mother. 

A couple things: where in this graphic does it mention that you're less of a mother because you had a cesarean? Where is it even implied?

Either this person has been repeatedly approached or attacked by a-holes who advocate for nothing but vaginal birth (which is possible, but really) or she has some underlying issues regarding the defensiveness of her cesarean (which in and of itself is okay - it's okay to grieve the 'loss' of a vaginal birth that you may have preferred or desired, and no one should tell you to just get over that).

All it is is a statistic. A number that reflects that things have changed since 1970. Nothing more, nothing less. Consumer Reports is not in the business to make people feel bad; they just present the numbers and hopefully make us think, why? What's going on here? 

Instead of showing emotions and having temper tantrums, we need to ask, why is this? What has changed since then? It's not a neat and tidy answer that can be best summed up in a few words, so you as the listener have to be open-minded about what you may hear if someone tries to explain it to you. 

Aside from ongoing dialogue on a basic level such as this - with the understanding and acceptance that even laypeople who are not physicians can quantify and understand the risk factors and weigh the risks and benefits - there needs to be a continued dialogue between doctor and patient. Informed consent in making these choices is often a huge problem, and if patients have not done their research they have no information to compare it to. Just saying "I would've died" is not enough, in the sense that you may not be aware that your doctor has a high induction/cesarean rate, prefers all his patients to labor with epidurals, does not support VBAC and turns around and writes "cesarean done by maternal request" in your medical chart that you will never see, even though you very much did not want that c-section but did what your doctor thought was best. 

That is not to say that all doctors are unethical slobs who just want to speed the process along, but no one can deny that it is a problem. Overmanagement of care and excessive treatment can expose both mothers and babies to increased risk, and without access to information through campaigns such as these, you may never know the difference. No one should be sharing information with the intent to shame someone, but neither is putting those shocking numbers out there calling anyone's motherhood capabilities into question. 

Secondly, challenging someone on the ideology of "my child and I could've died had I not had a cesarean" is bound to open up a can of worms. No one should be made to feel like they have to explain or justify what happened, and sometimes yes, that cesarean was very much warranted and mom very much was in control of the situation. 

Sometimes, however, when they do explain, it's clear there was more at play and the reasons behind it were likely caused by the physician himself, a phenomenom that is not unique to obstetrics. This is an important crossroad that we need to consider, especially as we attempt to move towards universal healthcare. It reveals the motivations of some physicians and should call into question our relative difficulty in questioning their authority. Therein lies the problem: in order to understand the rising rates, we must go back a step and understand the primary reasons they happen in the first place. We need to be our own advocates, do our homework and ask questions. Instead of getting mad, we need to stop feeling blamed and look at this data objectively, asking ourselves, Why is this happening? What has changed? 

More reading: 

Wednesday, February 24, 2016

Why it's illogical to tell women to nurse in the restroom

Now that I'm no longer nursing, it seems that I'm even more acutely aware of public bathrooms: specifically, what if I were nursing here right now? Logistically, nursing in public with three kids was sometimes difficult, especially since I was not up on baby wearing and how awesome it is.

I once attempted to cram my toddler in one of those insanely huge race car shopping carts into the bathroom with me and he wouldn't fit. Do I leave him outside basically unattended? Do I leave the door open so I can see him, and therefore the rest of the world could theoretically see me, too? Then I thought, what if I were nursing? Egads, that would potentially be a logistical nightmare, since women are typically expected to feed their babies in stalls instead of disgracefully doing so in public.

What about handicapped stalls, especially when there's only one available? If women are supposed to breastfeed in bathrooms, is it ethical for a nursing baby to take up that stall space instead of an actual handicapped person?

What about places with only one bathroom? If nursing should only be done in there, then most people are not going to appreciate waiting in line for a single stall for a baby to feed (both sides!), while everyone else has to pee. But you said I should go nurse in the bathroom, right? So you'll have to wait until my child is finished eating. Sounds gross, I know.

As far as single stalls, this lovely photo was taken at one of my favorite grocery stores - they only have one bathroom, and in this case I think an employee did not have enough time to properly clean it. Either that, or a poor customer thought she did a better job than she did. Most of us wouldn't want to sit there to relieve ourselves, much less nurse a child there. Still think a baby should have to eat in the bathroom?

When there's only one bathroom available, who takes precedence? The person who has to pee, or the baby who is screaming loudly? Tough call. Some would suggest mom and baby stay home, which doesn't seem fair, really, when life must go on. The rest of the family doesn't stop eating just because there's a nursing baby at home that keeps mom from going grocery shopping; errands don't stop needing to be done. Staying at home is a great option for those who don't feel like ever leaving the house until baby is weaned. Child won't take a bottle? Then you have another problem. Can't pump more than half an ounce no matter what you do? But just pump! Because pumping is so easy, surely everyone should be able to do it (says the woman who pumps Niagara Falls at every sitting). Sadly it isn't that easy, nor should a woman be forced into doing something potentially stressful and unnecessary when she could just bring her baby with her.

I find that people are so quick to give solutions to a problem that isn't that they rarely think about the next step: it's like they expect every public restroom ever to have a place to sit down (besides the toilet) and rest and be spotlessly clean. They expect there always to be a bottle and for that baby to always take it, without issue. The lengths women (even myself, regrettably) go to to avoid offending someone - even to the point of never breastfeeding, sadly - is pathetic.



Thursday, July 30, 2015

Improving birth by breaking the silence

The topic of childbirth is one that women - often those who don't even know each other - often freely engage in. We find ourselves sharing the most intimate details with strangers on what is often the happiest day of our lives. And for some, one of the most traumatic.

But it seems like if your outcome is anything less than happy, women suddenly don't want to hear about it. And when you question the actions of your doctor, or express anything less than total and complete gratitutde to your doctor, then you're attacked, criticized, made to feel like you're selfish for wanting something more or think you're smarter than the physician.

And yet, sometimes these stories still make it out, have a voice, are heard above the din. When "Kelly," the mom who had an episiotomy and was cut at least a dozen times by her physician, told her story, many women did come out of the woodwork. They shared their equally horrifying experiences, told her she wasn't alone, said the same thing had happened to them. It was terrifying and yet vindicating at the same time, knowing that finally these women are confident enough to talk about what happened to them. And with the number of them growing as more and more comments were added and the article continued to be shared, it was clear there were more of than them than not. And it was abundantly clear, even to those who are not involved in birth advocacy, that there is a shocking pattern of abuse in obstetrical care.

If you ask your mother, grandmother or great-grandmother what her birth story is, she may or may not be able to tell you. She may not remember any of it, drugged into oblivion with medication she may have felt at the time she neither wanted nor needed. While things have improved somewhat since then, it's not all that much, considering you still hear these horror stories. Women were given few choices then and to some extent, still aren't, with sometimes well-meaning and sometimes downright cruel care providers making choices for them on their behalf. These pictures continue to give us evidence of that.

I have seriously told women who were not
comfortable laboring at home to either labor in
the parking lot or the lobby but not necessarily
check in. That way you're close to the hospital,
but still on your "own time." How pathetic is it that
women even have to resort to doing this?
I can totally understand where she's coming from.
Photo used with permission from ImprovingBirth.org
Isn't that the truth. Remember Nurse Jenna's
post lightyears ago about "why you need
Pitocin in labor?" This was basically her
justification of it - they need to free up
beds. It's all your fault that you're not
laboring at home longer, even though
we care providers make you feel like it's
the most dangerous thing in the world to
do so. (To read the article, click here.)
Photo used with permission from ImprovingBirth.org
Coercion can often be another hallmark of abusive practices. And as some find out, they agree to the procedure only after much pressure and bullying, only to read in their chart later something entirely different.

The "maternal request" cesarean is often the result of
mom agreeing to a c-section after finally giving in to
bullying, scare tactics, and tremendous pressure to do so
from her physician.
Photos used with permission from ImprovingBirth.org
I am not at all surprised that this is a female physician. I
had similar experiences with one in my OB's practice and
found many of them to be far more condescending and
rude than the male doctors.
Photo used with permission from ImprovingBirth.org
When people say "Just trust your doctor" I think
of situations like this one and it makes
me want to throw up.
Photo used with permission from ImprovingBirth.org
I urge you to go through Improving Birth's FaceBook gallery. Maybe there is a situation that speaks to you or you have one to share - please do so. Maybe you personally have never experienced this and were completely unaware that such a thing existed. It is time for women to stop being shamed into silence and forced to accept something that is "normal" when it really isn't.

More information:
Improving Birth - Advocates for Evidence-Based Maternity Care 

Submissions will be accepted again soon - to submit your entry, click here

Monday, July 20, 2015

How to survive a family vacation out west

A few months ago, I started planning a vacation out west. A real extravaganza, we'd be gone for about three weeks and would plan on tent camping most of the time. Yeah. As the date approached and more and more people started asking us about our travel plans, I began to wonder: Am I *@&%^^@ crazy??

The view from our hotel
The magical date came and we set out from my parents' house in Ohio. I had a great deal on a hotel in downtown St. Louis through Travelocity or some such website, and was pleasantly surprised at how posh and super fancy it was for country folks like us. LOL What I didn't realize: it had no free breakfast and no pool. But never mind, the amazing view of the Gateway Arch from our room! more than made up for it (as did the totally awesome bathroom) and the kids didn't mind. Because I didn't want to spend the money on dinner, I made sandwiches in our room and ate fresh fruit that I had packed. Whew.

As far as meals on the road, I had planned on making as much "real food" as possible so we could avoid eating out and fast food all the time. In theory, this was great - especially as my stepdad had bought us a cast iron skillet (lid sold separately), we had a cranky campstove and lots of still frozen food in the cooler. Frozen water bottles will help keep things cold, they said. Uh huh. Until it thaws, the cookstove doesn't light (out of white gas, I see!) and the temps are so intense absolutely no one has any appetite. That didn't quite work out as planned.

Here's what I found:
Freezing food ahead is a good idea, at least in theory. Sometimes it doesn't always work out and stuff will go bad despite your best efforts. Super hot temps, kids getting in and out of the cooler, not enough ice, etc. The frozen water bottles worked for a little while but are not as practical as ice, since once they thaw, there is virtually no place to refreeze them. We missed at least one meal because of not enough fuel in the stove. (I advise bringing extra fuel so you don't get taken for a ride when you run out and the only option is some remote gas station that charges double the price.) Aside from that, realize that if you're not staying in the same spot more than one night or for the duration of your visit, lugging out the gear and food, plus setting up the tent, cot, sleeping bags and whatever else you have can be a giant pain in the butt and you just might say screw it. One other thing: when it's 86% humidity, no breeze is blowing and the temperature is in the 80s despite it being almost nine p.m., no one may even feel like eating anyway.

You may find yourself searching out Walmarts and grocery stores a lot to avoid the hassle of trying to keep food cold for longer periods of time. All I wanted was cinnamon rolls for breakfast, but I think three cans of them exploded on us in the process. (The one that didn't accidentally got dropped on the ground during cooking - totally not my fault.) Premade pizza crust with toppings worked well in the cast iron skillet, once we knew not to turn the flame up too high on the stove, and cooking stuff over a campfire works to slowly heat things up but otherwise takes forever. Making your own doughs may sound like fun, but again, if you're setting up and taking down camp each day and getting on the road, you're probably not going to feel like whipping up homemade pizza dough.

I also found it difficult to heat food in a cast iron skillet without a lid. If you need one while on the road, they sell them reasonably at Cabela's and probably any other outfitter store. It was easier to keep the bugs out of our food and keep stuff warm. While they sell the skillets at Walmart, they do not sell the lids there. You can also use glass lids or foil, too, though.

As far as staying in campgrounds, few required reservations. That doesn't mean that you shouldn't call ahead, either, though. I made almost no reservations while camping because I wasn't necessarily sure where we'd be. We chose to camp at KOA's most of the time, and for the most part they're large enough that they have plenty of room. However:

This may not include areas that are close to national parks, like Yellowstone. We stayed at the KOA in West Yellowstone, which is actually in Montana, and it was crowded. Very crowded. At first it was kind of a turnoff, but the people milling around and doing fun activities (which will cost extra) was almost like a little community. There are bears around, but usually outside the perimeter of the campground because, again, it's so crowded. We were able to call ahead a few hours and reserve a spot, and by the time we got there I think they were full (I did see some empty tent sites but I'm wondering if they were reserved). Cabins are fun, but I'm guessing that close to Yellowstone they were probably reserved months in advance. And even tent camping in that area will cost you: it was probably more than $60 a night just to set up our tent, which is the most we paid to tent camp the entire time. But you are close to the park and there is tons for the kids to do, plus a very cool gift shop (which had some items in it that I didn't see in the park's gift shop).

Camping in Yellowstone itself may sound like fun to some, but I chose not to simply because my kids are a mess when they eat and I didn't want to deal with meeting a bear face to face. Bears, as well as other predators, can be a problem if you don't take precautions. Because I wasn't sure what we'd end up doing, I did research camping in bear populated areas, and there are usually guidelines posted in the campgrounds within the parks on how to properly store food and anything scented - this means soaps, detergents, perfumes, anything. It may sound like I'm being paranoid - after all, we saw not one bear on our trip - but when you've never camped in those situations before and have three little kids in tow, it's always a good idea to be prepared. And never, ever, bring food into your tent. Depending on where you are, even pop-up campers won't keep you safe if there is substantial bear activity going on (but chances are if it's that bad you won't be allowed to camp there anyway.)

As far as camping in Yellowstone, don't expect to just show up unnounced and get a good spot. I've been told that these places fill up sometimes a year in advance, so if you want to camp there, plan well ahead. You might get lucky, but I wouldn't take chances with it as it could put a real damper on your trip if that's what you were hoping to do. (This link has more detailed info on making reservations at the major parks, and suggests less than a year window, but it's still several months ahead of your actual visit.)

The only bear we saw was in the
campground giftshop 
As far as Yellowstone itself, it's wildly impressive but extremely overcrowded in some areas. This is one of the downsides. People everywhere, including in all the parking lots leading to the sites along with the way. There are bathrooms strategically placed throughout the park, but when we went through there were sometimes lines fifteen people deep for a unisex bathroom. Some sites we had to avoid altogether because there simply was no place to park, which was disappointing. The gift shop was pretty crowded but has fairly reasonable prices, and the attendant told me that crowd was nothing compared to what they normally get.

Which means that if you're looking for wildlife, you may not see any until you get to the less populated areas of the park. We saw a few bison along the road when we first entered, but the herds are usually further away from the more populated areas. If you see bison close up, don't be a dumbass: stay in the car. Zoom in with your camera or just look from a distance, because these huge, seemingly docile creatures will charge humans that are getting into their territory. There is a rather disturbingly impressive video in the visitors center that illustrates this point nicely.

Other dangers I added to my mental list included cliffs, dehydration, poisonous and dangerous insects and animals, and boiling hot springs. Don't overresearch it - trust me - just know that while it is possible to be paranoid to the point of not enjoying yourself, these are very real dangers that have claimed the lives of both young and old indscriminately. That's all I'm going to say about that. Keep a close eye on your kids, insist on holding little ones' hands, and try to enjoy yourself. The vast majority of people injured or killed in the park(s) do so because they either weren't paying attention or were being stupid. Some have said they saw children hovering dangerously near the edge of the Grand Canyon, shoving and horseplaying on the boardwalks of Yellowstone - park rangers will spare no feelings in yelling at you if you choose to wander outside designated boundaries.

LOL What?? 
As was the case with The Grand Canyon, Painted Desert and Badlands, you cannot just whiz through these parks - if you're pressed for time, you may want to choose which sites in particular you're interested in or skip them altogether. If you decide to go through, an America the Beautiful Parks Pass ($80) is a pretty cool option. They can be purchased at probably any National Park (although check the list online to be sure) and can get you in either for free or discounted admission to all national parks for up to one year.

Definitely bring a paper map. And maybe a laptop. If you don't have cell service (which is pretty common once you head into parts of Utah, Arizona, Yellowstone and Montana) that GPS isn't going to do much good. A road atlas is a must. And if you're taking six gagillion photos, you may need to dump them onto a computer or the Cloud if you run out of room on your phone. It also helped me to have an actual computer to continue to pay bills, etc. and have more of a physical connection on the trip than with just my phone. WiFi, even in hotels and campgrounds, may totally suck, so be prepared. Our hotel in northern Arizona frequently crapped out on me and kicked me off the network.

You will likely have overage charges on your smartphone, unless you already have a mega huge data package. Because of my particular plan, the Verizon rep told me it would actually be better for me to pay the overages than switch. You can also go into Cellular (under settings) and turn off the apps and stuff that hog the most data in order to avoid overages, which just means you won't be able to use things FaceBook or Pinterest while on the road.

If you're traveling out west, get gas frequently. Even if you feel like you don't need it, it's probably still a good idea, especially as you head into more remote parts that either have gas for twice the price or none at all. Thorough car maintenance before leaving is also a good idea, because once we were cruising down Utah highways we realized, hey, it's been about twenty minutes since I've seen another car.

Definitely check the forecast before you leave. For several weeks, I would check the weather for the various parts of the country we planned on visiting. Not that the weather will be that way when you get there, but it helped me to prepare as far as packing. We brought a heavier jacket, fleece, pants and long sleeves for the nights in Yellowstone, which can get into the 40s even during the summer. Obviously not everyone did this, because we saw a lot of people bundled up in Yellowstone sweatsuits, which the park must make a killing on from people who aren't prepared for their wild weather.

If you're using ideas from Pinterest (or anywhere on the internet, really) test them first. What works for one person may not for another, and depending on where you are, it may not be the best idea. Those wax cotton pad firestarters may be awesome, but I used scented candle wax - which was all I could find - and if I were camping in Yellowstone, I definitely would not have used them. We lugged them, with the recycled egg cartons - halfway across the country and when we finally did use them, the wood wouldn't burn. There may be burn restrictions in place out west, in which case you may not be able to have a campfire anyway.

These solar powered mason jar lights sounded like a great idea - dual purpose not only for lighting up the tent at night, but keeping matches dry. Unless you're white water rafting and bringing all your gear along or leaving it out during a thunderstorm, I think we'd be hard pressed to find a reason for our matches to get wet. Not only that, but my solar lights were way too small for the diameter of the mason jar and I just stuck my matches in a ziplock bag for the same effect. Solar technology in general, I've found, pretty much sucks in the long term (as in after a few days of regular use), as I read review after review of expensive solar-powered lanterns from perfectly reputable companies either not working straight out of the package, not holding a charge, or fizzling out after a few uses. I did use some solar stakes I found for a $1 at Walmart to light the tent at night, but I think one totally stopped working and the other decided to stay lit when we didn't need it, which meant it went out before the night was over. What did work for us was inexpensive glow stick lanyards, which come with a string to hang from the ceiling of the tent (ours has a hook there for a lantern) and are two for $1. Some campsites aren't actually dark enough to really need them, though. And of course bring batteries and lots of flashlights. 

I also suggest not only going through all your gear before you leave, but if you're buying a new tent, get a good one. I read tons of reviews and finally settled on one that ended up being out of our budget, but was worth it. One reviewer rated it favorably in high winds and rainy conditions, which is exactly what we faced while out west - those storms can come up fast. When you're struggling with the rain fly at 1 a.m. (hello, Tucumcari, NM) you want something that will withstand the blast, and some tents definitely fare better than others. If you plan on doing any serious camping in the future, spending money on good gear is definitely worth it.

TripAdvisor was a very helpful website along the way (they even have an app). From campsites to parks and hotels, they offered the most comprehensive reviews I could find, which was an awesome tool to help guide us in unfamiliar territory. Blog posts from others who've done it also helped me a lot (which is why I'm writing this post). The GasBuddy app wasn't as helpful as I thought, and I ended up deleting it in order to save space on my phone. The white noise app wasn't too bad and offers lots of different choices for background noise, but some campsites and cabins have electricity if you're really desperate and need a white noise machine or fan to get you to sleep.

I have pretty much nothing bad to say about KOA campgrounds. They are awesomely family-friendly and usually have all kinds of fun things for kids to do. There are lots of others out there, but KOAs are usually pretty easy to come by, you'll meet nice people and they are generally reasonably priced. They also have pretty cool cabins that are about the price of a hotel room or less that have electricity (some even have bathrooms and TV). We decided to check one out while in South Dakota and I'm glad we did, since we got a whopper of a thunderstorm that night.

You will probably drive each other nuts. Face it - if you're in the car a lot, this is bound to happen. I put a big bag of activities together, from car bingo (which they hardly played with) to journals, books, coloring pads, and homemade word searches (click here). Of course, DVDs are probably essential and I changed out the music on my iPhone to liven things up (which actually helped keep me awake while driving through the night to get home, who knew). For those moments, it might be helpful to say a prayer, take a deep breath, pull over at a rest stop (several have playgrounds, woot!) and take a breather before getting back on the road. Have a plan, but don't overplan, and be prepared for things to not always work out - but by all means, take everything in, learn a ton about our country,
and have fun!

Monday, February 23, 2015

You should be worried about pharmaceutical ethics: except when it comes to vaccines

In just a few short days the panic of measles has died down to barely a murmur in the news. The baby named Gryffin, who mother incited mass panic with her social media rant (and whose grandfather Alan Hibben is apparently a Canadian pharmaceuticals bigwig, oh well) has tested negative, predictably, and is presumably doing fine. Other infected individuals have apparently gone off into the sunset to convalesce uneventfully, since we haven't heard a damned thing about how they've fared since then; it's as if no one cares anymore (unless they die, of course).

Meanwhile, a few other interesting articles have surfaced (some old, some new) that haven't been getting the attention they should in light of the heated arguments and loss of friendships over whether to vaccinate or not. One such article was posted by Huffington Post Canada, who seems to be drinking less KoolAid over the vaccine debate than their American counterpart: "Merck has some explaining to do over its MMR vaccine claims."  Yes, yes they do have some "explaining" to do: but will they?

The article, originally published in September, leaves me wondering: has anyone followed up on this situation and whistle blower claims - which state that:

"It [Merck] "failed to disclose that its mumps vaccine was not as effective as Merck represented, (ii) used improper testing techniques, (iii) manipulated testing methodology, (iv) abandoned undesirable test results, (v) falsified test data, (vi) failed to adequately investigate and report the diminished efficacy of its mumps vaccine, (vii) falsely verified that each manufacturing lot of mumps vaccine would be as effective as identified in the labeling, (viii) falsely certified the accuracy of applications filed with the FDA, (ix) falsely certified compliance with the terms of the CDC purchase contract, (x) engaged in the fraud and concealment describe herein for the purpose of illegally monopolizing the U.S. market for mumps vaccine, (xi) mislabeled, misbranded, and falsely certified its mumps vaccine, and (xii) engaged in the other acts described herein to conceal the diminished efficacy of the vaccine the government was purchasing."

In an additional lawsuit, Merck came under fire for not only monopolizing the market on their mumps vaccine, but selling an overpriced product that was ineffective as well. The suit contends that Merck predicted a mumps outbreak would occur - and it did - especially in highly vaccinated populations both in 2006 and in 2009-2010.

And only what, five years later, we're hearing about this. After assuming "I'm sure they've all been vaccinated, you need to get vaccinated!" over and over again. Well, what if they were? "Oh, sometimes that happens, they're not 100 percent guaranteed." I'm sure it's never because the manufacturer knew they were selling a defective product, right? "Oh, you're such a conspiracy theorist!"

I find it pretty crappy that American news outlets didn't pick this up and trounce it all over the place. There is a virtual treasure trove of articles about ethics violations and conflict of interest between drug makers and studies, all from perfectly reputable sources that are trusted by most Americans, and yet, here we are. Still calling non-vaccinating parents "stupid" and expecting them to actually trust the same companies and regulatory bodies that are fudging numbers, touting flawed or seriously questionable studies when it comes to other medicines on the market. But that study that proved vaccines cause autism? Yeah, that one was debunked. So get over it.

For the record, I vaccinated my kids. I think one of them still needs another dose of varicella (whoops! eye roll) and if it were up to me or I had the energy to fight it, I'd probably say screw it and we'd proceed as normal. I am increasingly skeptical of vaccines, though; not because of autism, or Jenny McCarthy (gag) but because of stuff like this: that I'm supposed to question and be afraid of the ethics violations of drug companies and the FDA, just as long as it doesn't come to vaccines. Okay, that makes perfect sense.

It seems that when parents genuinely do have concerns about these companies or the far reach of the FDA when it comes to vaccinations, they're belittled, criticized, sworn at, and practically threatened with death or jail: they should die, their kids should die, they should be jailed, blah blah blah. I've heard it all. What they don't realize during their foaming-at-the-mouth rant is that they sound as bad as people who claim vaccines killed the dinosaurs (or whatever ridiculously implausible anti-vaccine rant you can think of). Besides, all that's been done before: during the American smallpox epidemic, refusers were often vaccinated at gun point or jailed because of their beliefs. And even then, they realized that duh, we can't really send a government-employed official out to hunt you down and vaccinate you against your will, so they stopped doing it by force (at least if you're a civilian). (Although there are some reports that claim people in Malawi were recently held at gunpoint during vaccination campaigns, but I can't corroborate that yet.)

Forbes Magazine - whose articles on vaccines often read like paid propaganda, in my opinion - warns us all to be wary of the FDA and the recall of generic Wellbutrin's 300 mg dosage, a drug primarily used for depression and smoking cessation. It was found that increasing numbers of patients were reporting drug ineffectiveness with the 300 mg dosage, and patient advocacy groups were ignored when they gathered hundreds of complaints from the get go. The FDA's response was essentially to blame the patient, since they do have mental illness after all, and claim that they had "faith" the drug was working as it should.

We should be scared to death
about the FDA ignoring
complaints about a generic drug -
but not about anything else?
Photo: Egahen/freeimages.com
Instead of conducting their own studies, the FDA then asked the manufacturer to look into the claims that the generic drug was not truly equivalent to the name brand. Even after they were forced to look into it themselves, they were slow to admit there was, in fact, a difference. Not only that, but they had to admit they only studied the 150 mg dosage, and didn't study the efficacy of the increased dosage at all, only assuming that it would work the same way. What was equally shocking: they received countless complaints and knew there were problems, but did absolutely nothing about it until they were forced to and could not contain the "problem" any longer.

This is, however, not the only case of bioequivalents not really being equivalent. The same is true of Synthroid and levothyroxine, used to treat thyroid disease, and some patients complain of a return of symptoms when being put on the generic drug. Most are told "it's all in your head" and insurance companies refuse to pay for the name brand preferred, even when it's clear the generic doesn't work for that particular patient. (If you want, you can read more here, but it's complicated.)

In this case, thousands of patients can be under treated for thyroid disease - which can lead to a host of other autoimmune diseases if not treated properly - not only keeping them feeling miserable, but eventually driving up healthcare costs in the long term. In the case of generic Wellbutrin, the author of the Forbes article rightly points out the toll is probably great: the number of people who, despite having mental illness, are perfectly capable of advocating for themselves and understanding their medicine isn't working; the number of patients who aren't able to advocate for themselves who are just further medicated into oblivion; and the patients who may have likely committed suicide because they were being inadequately treated. No doubt when that comes to light, there will be lawsuits, as there should be: and there are billions of dollars paid out to injured parties because of medication problems and recalls.

But why not vaccines? While there is the Vaccine Injury Compensation program, it seems like much is done to discredit and remove any possible link between vaccines and injury of any kind, autism or not. I personally don't know that I'd call it autism, per se, but in some children, no matter how "rare!" it is, there are still adverse reactions, some quite profound. You cannot expect parents to inject their children with a drug - and yes, it is a drug, with the possibility of creating side effects like any other drug - and poo poo their questions or concerns over it just because it doesn't happen to the majority of children. When you look at kids who are exhibiting marked, profoundly different behaviors shortly after vaccination that they never did before, you cannot simply dismiss them and encourage parents to remove their tinfoil hats of disbelief and forge full speed ahead into the most aggressive vaccine schedule this country has had to date.

Nor can you dismiss them from questioning the motives of "Big Pharma" and the FDA when it comes to vaccine efficacy and safety - because after all, this is the same entity that declared generic Wellbutrin 300 mg (and a laundry list of other drugs over the years) perfectly effective and "safe."

More reading:
Patients vindicated! Generic Wellbutrin withdrawn - The People's Pharmacy

Wednesday, January 21, 2015

When the media totally gets it wrong

When the media starts talking about a topic you are acutely aware of or one that's personal to you, you are more aware of when they get it wrong. In my case, birth advocacy and thyroid disease awareness are two subjects that are close to my heart and something I know a lot about.

So it's utterly depressing and maddening when you come across an article that is just so bad and misleading that you want to scream at the top of your lungs.

When the news does a terrible job covering a topic you're
intimately familiar with, it makes you wonder how
they handle all the other stuff.
Photo credit: jayofboy/freeimages
This one - The Daily Mail's "Australian woman gives herself a Cesarean section" - is pretty horrendous. You immediately conjure up images of serious peril; something has gone horribly wrong and she's in dire straits with no sign of help anywhere, right? Wrong!

Apparently, this is an article about a maternal-assisted cesarean (definitely not the same as performing the surgery on yourself, as the Mail implies), something that is verrrrrry slowwwwwwly catching on in the birth community. By slowly I mean probably at a snail's pace, because we still don't hear very much about it. The woman, disappointed over the fact that she could not have a VBAC with the twins she was carrying, decided that she wanted more of an active role in the birth and presented her case to her OB, who - not surprisingly - flatly refused. Apparently after he did more research, (gasp!) he changed his mind. (double gasp!)

"'(The doctor) was quite willing once he realized the risk of infection wasn't as high as he perhaps first thought,' Mrs. Wolffe said.'"

Amazing. An OB that listened the patient, while still yielding to necessary medical intervention, and they both had a positive outcome. I am speechless.

However, that's not the problem. Further down in the article, a video accompanies it captioned 'Live Cesarean: graphic 2013 video of birth broadcast on Twitter." Okay… except that's not the Australian woman's birth they're showing. In fact, it's from a hospital in Texas, something the Mail doesn't exactly explain beforehand and most people from their UK readership didn't pick up on (including, apparently, all the American accents in the room).

How this had anything to do with this woman's birth is beyond me, but it sure makes for great fodder for readers to totally attack her - everything from her looks, to her birthing practices, to a "DIY birth" (which it obviously was not). Some even criticized the weight of the babies, for whatever reason. At any rate, it did nothing to advocate for alternative choices in birth and only made the mother look like a total freak (if you trust the people commenting).

Thanks for totally misleading your readership, Daily Mail. Not that that's anything new, apparently…

Dr. Samadi's commentary on Fox left a lot to be desired,
namely the idea that there is more than one way of
treating thyroid disease - not to mention that many
doctors are neither well-versed in or willing to treat more
complicated cases.
January is Thyroid (Un)Awareness Month
Like bajillions of other Americans, I have thyroid disease, and it's a topic I've written about a lot. I've also basically forced myself to get educated on it in order to understand what was happening to my body, because I found that my doctors were not always that knowledgable. Apparently these guys are no exception.

Dr. David Samadi is apparently one of Fox News' resident doctor experts, which in and of itself isn't bad - except he's a urologist commenting on thyroid disease. Since the two aren't obviously related, I was puzzled why he was weighing in on the subject. While I realize they have time constraints on the broadcast, they really do reflect a serious problem with misinformation and an overall lack of education on the subject, which can often leave patients untreated or improperly medicated.

While I do give him points for mentioning more than just the TSH, it's important to know what to do with the results. Just this week I heard a patient say how enthusiastic their doctor was about ordering tests, even though she'd admitted there were some she had never heard of, but then also admitted she had no idea what to do with the results of the bloodwork. That doesn't help you very much as a patient, but at least she was being honest.

Another expert, NYU Medical School internist Dr. Mark Siegel, gives a very watered-down, extremely over-simplified and perhaps even dismissive explanation. His commentary also left a lot to be desired, and outraged a number of people in the comments who have firsthand experience with the disease.
"Here's the good news…[this] is so treatable… if you have low thyroid, I can give you something called levothyroxine. [It] just replaces the thyroid and you're back to normal. It's a great, great medication." 

Yes. Well. If you do well on levo, that's your business. Not everyone does, and while some prefer the name brand equivalent, Synthroid, some would rather choose neither and use Armour Thyroid instead - but you usually won't catch a single mainstream physician mentioning that in an article about hypothyroidism. Whether it's intentional or not, Synthroid is usually the only drug mentioned, which misleads patients into thinking Armour has been pulled from the market or simply doesn't exist anymore.

And wouldn't it be great if it were "just" that easy! Just pop a pill and you'll feel like a million bucks in no time. For some, it works great and they're on their way, but for others, it's a constant battle to get a physician to treat them adequately and even take them seriously.

When you catch them screwing up on a topic you're familiar with, it almost makes you wonder what they're telling you about all the other stuff.