Dentist and DX’s

IVF isn’t going as well as I expected. Not terrible, just not as well as I had hoped. Eh. Whatever happens, hapens. I just wish my body was going to give me a fightin’ chance.

So I’m at the dentist today talking to my hygienist. The last time I was there, a year ago, I talked openly about my daughter’s NTD. I don’t know if I used the words abortion or termination, but I think I gave off that impression.

So today, I was back (after having cancelled/rescheduled multiple times) and we were complaining about insurance companies.

DH: Ugh, I know. When I lost my baby last year, my insurance wouldn’t cover my procedure. All the providers were out-of-network. I found someone I really liked, and got my insurance company to approve him, but it still took months for me to get my money back. My doctor was great! He was so compassionate!

Me: Who’d you see? (I knew exactly what “procedure” she had and who she saw. I just didn’t know if she tx’d for a fatal dx or a grey area, like mine.)

DH: Dr. X.

Me: That’s who I saw!

We talked for awhile about how awesome he was, how compassionate and caring he was. I told her that I testified in Austin this summer and that Cosmo ran my story on their webpage. She was amazed. She then told me that she tx’d for Down’s Syndrome. I think she was seriously shocked that people would judge her for making a decision in the best interest of her child. She said it perfectly: I’d love my child no matter what. I could deal with this. But it’s not me who has to deal with it.

We talked about how DS was a grey area, and that people don’t understand all the complications that go along with the dx. We talked about my daughter’s dx and all the complications that were involved. We talked about how she used to work at a day care center for disabled children/adults(?). We talked about how she was at work when she got the call that her son officially had DS and a patient told her “I hope you keep the baby.” Again, I don’t think she realized that the fundamentalists included HER in the anti-abortion issue. I think she learned the hard way.

I know it would have been completely against the office policy to contact me, but I really wish she would have. She said not many people knew what happened, but even so, she lost two friends over it. She deleted her Facebook because we are in Texas during a vitriolic election with Wendy Davis, the “Abortion Barbie”. Too many of her friends were making ignorant and hurtful comments.

1:3 women will have an abortion. Whether you are aware are not, you KNOW someone who had an abortion. 10% of all abortions in the US happen after 12 weeks of pregnancy. In my experience, most women who have had a late term abortion (after 12 weeks), just let people assume that she miscarried because of the stigma.

I got the feeling that the woman I was talking to wasn’t as well supported as I was. I wonder if she found good on-line resources like I did. I hope she was able to properly mourn her loss instead of merely delaying it. I had all those questions that I didn’t get to ask because I had a pick shoved in my mouth most of the time.

I just hope that it was helpful for her to connect with someone who made a similar choice.

 

Reflections on the Past Week

DH has now been moved to a rehab hospital. We are hoping that he is able to come home quickly, but for right now, we’re just trying to make the best of a bad situation. However, this illness triggers a lot of feelings about infertility and TFMR.

• How could I have appropriately dealt with a disabled infant daughter AND a disabled husband? How would we have been able to afford this? I’m not just talking about medical expenses (we hit his out-of-pocket maximum on day 1 of ICU care), but I’m talking about the time off work. We have no idea how long he’s out of work, and the idea of living off of just my salary is frightening, even now. Luckily, he has disability insurance, so we’ll be getting 60% of his income in another week, but I have no idea if that will be enough to cover the bills. Yes, we stopped doing the IUI’s, but we did just buy two new cars.
• Thank God we aren’t doing IUI or IVF. There’s no way we’d be able to do it this month anyway.
• Many of the conditions that he’s dealing with are conditions that my daughter would have had to deal with. Ataxia. Paralysis. Pain. You get the idea.
• I don’t trust the medical system. We have to be aggressive for his pain meds, and we have to constantly repeat, examine, and correct his medical records. The hospital originally had him scheduled to be discharged to a psychiatric unit! And this is for an adult. As protective as I am over him, I don’t know what I would have done if they had screwed up on my daughter’s medical care.

Also, the arguments over the Affordable Care Act are starting to trigger me as well. I really don’t give a damn about my doctors  asking me about my sexual history (isn’t that what doctors are supposed to do? Especially OBGYNs?), but some people seem to think that it’s too invasive.

Invasive? I’ll tell you what’s invasive. Invasive is feeling obligated to bring up your medical history to the Texas Senate to try and convince them not to place unnecessary restrictions on women’s healthcare. To be ignored like that after I told the most personal details of my life was more humiliating than any medical procedure I’ve ever experienced, including transvaginal ultrasounds.

I can’t stand to watch the news. I skim past updates on Twitter, because I take it all too personally.

I feel like I’m dealing with it all as appropriately as possible, but it’s still stressful.

I have so much more to say, but this was just a quick update to reassure people that things are progressing and that I’m ok. I have to get ready for the week – I have to grade and lesson plans and take care of the house, but all I really want to do is just make sure that he’s ok.

1 in 10

I’m going to share my story with 1 in 10, a new blog about late term termination, but I just haven’t been able to write anything else down. It took a lot out of my to share my story with the Senate, get interviewed, keep up with everything on Twitter, and then have to face nasty comments on my blog.

I really think that I know why my last IUI didn’t work.

In any case, I feel the need to share my story, perhaps because I need justification. If anything, this whole debacle has taught me that:

A. People have no idea what an abortion is or how it is performed. They make assumptions based on what left or right winged news source they most closely identify with. I’m tired of being heralded as a brave feminist fighting for women’s rights. I’m tired of being accused of being a heartless, slutty, murderer. I’m neither of those things. I’m just a woman who did what was best for her family so that her daughter didn’t suffer.

B. People who can’t/won’t feel compassion for others will never be able to, even if tragedy befalls his or her own family. They either make personal exceptions or live in denial. Like my father.

C. I’m tired of people telling me that they know of a little kid with (insert disease/disability) here who is happy and healthy. You have no idea what life is like for that family or that child. You have no idea what it means to face $10,000 of medical bills. You have no idea what it’s like to have to figure out how, as the primary breadwinner of the family, pay for everything if you are going to bed ridden for four months.  You have no idea what it’s like to have to think about DNR orders for a baby. Even if you have been faced with similar situation, you have no idea about the details of my life, my situation, and what my daughter faced. I’ve said it before, and I’ll say it again: your reality is not universal.

D. I’m tired of feeling like I’m not allowed to mourn the loss of my daughter since I “caused” it. I’m tired of people thinking they know what I went through because they had a miscarriage at 6 weeks. (Please don’t think I’m belittling those losses or saying that I went through MORE grief – they are just different).

E. I’m frustrated with people who think that six months is enough time for me to have “gotten over it”. Not a day goes by without me thinking about her, missing her, wondering what life would be like if we had CTT.

D. I’m tired of hearing about abortion regret and using that as a reason to limit abortion access. Sure, you hear about women who regretted their abortions, but you don’t hear about the women who regretted their children. It’s too monstrous to admit. Instead, they neglect their children, passing them off to other family members or just letting them raise themselves. Women with sick children often have to suffer in silence lest people think they want to currently kill their child. You can’t dictate laws because of regret. That’s not responsible.

Regretfully, I am 1 in 10.

Crushed

One of my friends went through a horrible situation a few years ago when her daughter was dx’d with T13 at 26 or 28 weeks. She had to leave the state for her procedure. She was a huge resource for me when I first got my daughter’s dx. I may have mentioned her before – she was the first person I’ve known to fully come out and admit that she terminated her pregnancy for medical reasons on Facebook. I was so heartbroken for her that day – little did I know I would be in that same situation a few years later.

She contacted me today – she’s 17 weeks pregnant – to tell me that her unborn child has a 1:10 chance of having an open NTD. She has no idea what kind might be suspected. She has a level II ultrasound on Monday, so it’s going to be a long weekend for her.

I’m hoping that this is a false positive, but even just having this worry is cruel enough.

Supposedly, these birth defects are supposed to be rare, but how come I have two friend who have gone through this? (I don’t count my online buddies from the TFMR board on Baby Center since we are all there for the same reason).

This is just heartbreaking. One of my biggest fears now – that I’ll get pregnant again only to have to be faced with this same situation.

This just isn’t fair. It isn’t fair. Isn’t fair.

One Week Down…

One to go.

I have a massive headache today. Too many things to worry about.

My father called yesterday, fishing around for what I’ve been up to this summer. I was pretty certain he already knew what I have been up to, so I just responded with the fact that I testified – I didn’t even say what about. His response? “So you’re an abortionist now?”

What does he think I did on January 2nd? Does he not know that a termination is the same thing as an abortion?

I really don’t remember too many details from yesterday, but I do recall trying to explain to him that Texas is going to make what I did illegal. His only response was “No.”

This is what conservative radio talk show hosts do to people.

Other people seem to think that since I had mine done at 18 weeks that ANYONE should be able to TFMR before 20 weeks. That this wouldn’t have affected m, and won’t affect me in the future.

Let’s break this down, shall we?

I had my procedure at 18 weeks, but it took two weeks from the time the dx was identified. I didn’t have an amniocentesis.

I had to FIGHT to see my perinatalogist as soon as I did – they originally wanted me to wait over a week to see them – they were booked. I scrambled to find someone who could see my sooner – on a Friday, and we were able to get the procedure booked for the next week.

However, what would have happened if there were only five abortion clinics in the state of Texas? Do you really think I’d be able to be seen as quickly as I was?

If I had had the amnio done, it would have taken (generally) between 10-12 business days.

That would have, at the earliest, made me 20 weeks pregnant. Now imagine what would happen if a family got their DX at 19 or 20 weeks.

So essentially and very easily, this bill is easily going to end lots of TFMR here in Texas.

Just because a diagnosis isn’t fatal doesn’t mean it isn’t horrific.

Until you have faced a poor-prenatal diagnosis like mine, don’t presume to empathize. You don’t understand. Even if you know someone who had a similar situation to mine or my daughter’s, you don’t know MINE. You don’t know my fiances, my personal health, the stability of our jobs, how strong our marital relationship is, what our future goals are, or how badly off our daughter’s dx was. That’s why spinda bifida is a grey area. We just knew that our situation was a darker shade of grey.

Don’t sit there with your pictures of butchered infants, or well-worn baby shoes, or your crosses or Bibles and pretend to know what me and my family faced. Consider yourself lucky.

I don’t think my already tenuous relationship with my father will ever heal.

My mother started crying the other day when she told me that she realized I could be pregnant while reading my testimony before the Senate. She was so hopeful. If I am pregnant, I wonder what all this adrenaline is doing? I’m staying pretty calm, given the situation, but I’m still worried.

It’s also hard for me to eat – I get so worked up that I don’t have an appetite. I’ve been forcing myself, but it’s hard not to worry, especially after you’ve already lived through a nightmare.

Monday and Senate Bill 1

Fireworks of Another Kind

We went over the in-laws house last night to celebrate, and before the other guests got there, the conversation between DH and his parents landed on abortion. I don’t know why I was thinking this, but I had assumed FIL would be a little more open-minded about the topic, especially after what we went through – he drove the car the day the actual procedure happened. Obviously, he has the same mental disability that my own father has: conservative talk radio.

I don’t know what statistics he’s being fed, but he’s buying them. He kept referencing Kermit Gosnell (is that his name?) and his “House of Horrors.” I’ll admit, I have purposely stayed away from that bit of news because I avoid triggers. I get the impression THAT is one huge trigger. From what I’ve gathered, that’s not pro-life – that’s just monstrous. Anyway, apparently conservatives seem to think that his practice is par for the course. He also didn’t understand that the government was going to make what I did illegal or that the regulations were so strict (and expensive) that it was essentially banning abortions in the state of Texas.

At one point, he said something to the effect of we have no idea what happens in those places. DH jumped in and reminded him in no pleasant terms that we did indeed knows what goes on in those places. DH was getting so upset that I thought he was going to to leave in a fit of rage. Luckily, the day was saved by a wandering salesman who rang the doorbell (seriously!) to try and sell alarm systems.

But DH was up all night sick to his stomach. I think that since I’ve been dealing with my father, it wasn’t as distressing to me – I’m used to being disappointed by the father figures in my life.

I think the thing that makes me the most angry that is I have personal experience with this _ I have had an abortion. I’ve lived it. And yet because my story doesn’t fit in with their schema, they dismiss me, dismiss my pain, and dismiss my daughter – as if it never happened.

It’s easier to think that abortion is simply ending a baby’s life than understand that the issue is a mufti-faceted issue that won’t be solved by bans and non-medically necessary  regulations.

All my father and FIL hear is what they Michael Berry (or whoever) tells them. I’ve lived it. Done research. I know how it will affect my own life personally if I end up getting pregnant and end up in another desperate situation again.

These are also the men that want to end abortion, but don’t give a damn once the child is born. They are opposed to social programs, public education, and health programs. It’s like they WANT a sub-class to pump their gas, mow their lawns, and justify their elitist attitudes.

I had to remind DH that my father was a man who refused to pay for child support, so if he didn’t take care of his own child, why would he even be remotely interested in the welfare of stranger’s children? He uses the excuse that he should be able to to make that decision on his own, but I’ve learned from experience what decision he would make.

I’m going to clean the kitchen (maybe) and probably post a much happier and positive entry later on about my experience yesterday. I’m going to try and spend the next two week as calm as possible – which will be hard on Monday when the House hears HB2!

Texas HB2

It’s changed names so many times I can barely keep up with it. But last night, the disgusting piece of legislature now known as HB2 passed committee. The Senate Finance Committee (I’m still boggled by the fact that a FINANCE committee is making this decision) will hear the abortion bill at 10:00 am on Monday morning.

I spent last night glued to Twitter, reading updates about the bill.

Rep. Bryon Cook, Chair of the House State Affairs Committee is an asshole, let his obvious bias dictate who he let speak and who be scolded for outbursts. The anti-choicers apparently knew that they were letting people sign up to testify early, and there is suspicion from those who were there that they were just signing random names up in opposition target than real people actually being there.

There was a man who testified last night – a JUGGLER – who was supporting the restrictions/ban*. What the hell does a JUGGLER know about my body? My choices? My life? How is this juggler going to be affected by this bill? He isn’t, unless he and his wife get a poor prenatal diagnosis at 16 weeks and have to wait four weeks for the chromosomal tests to come back with the worst news he’ll ever get in his entire ballsy life.

God, I know people say that they don’t want to wish TFMR on their worst enemy, but I want these people to at least feel an inkling of the trauma that I’ve gone through. Is that cruel of me? I want the bill’s sponsor to be faced with a horrible prenatal diagnosis. I want David Dewhurst’s daughter to have to get a weird ultrasound at 20 weeks.. I want someone Rick Perry loves, admires, and respects to admit to having an abortion after a rape. And I don’t care if me saying this is cruel – I want them to learn a little EMPATHY for people who are in such a luxurious position as they are. Even if those things did happen, it wouldn’t matter. They can all afford to one of the new abortions. They can all afford to leave the state.

People are estimating that this little bit of legislature would TRIPLE abortion costs in Texas – and that’s not including travel time. I paid $2500 for my abortion. If I were faced with this again (at $7500), I’d be able to pay – because my family supports me and we would scrimp up the money to help make this happen, but just because I would still be able to protect and do what’s best for my family doesn’t mean everyone can.

YOUR REALITY IS NOT UNIVERSAL!

What would these politicians have me do? Refuse treatment once my daughter was born? Give her up for adoption and start over? Or quit my job, sell my house, and sell my soul to the insurance companies and live in debt (slavery) for the rest of my working days.

Texas shits on everything that I hold personal and dear – personal choice, education, the environment. CORPORATIONS have more rights than I do in Texas.Rick Perry might read my e-mail if I were a corporation.

I really want to be in Austin on Monday, but I’ll be 4 days past IUI, and don’t want my stress levels to get too worked up. Maybe I’ll schedule my massage for next week?

Grey Areas

Part of the shame (for me, at least) of TFMR is that my daughter’s diagnosis wasn’t terminal – she could easily live with modern medical intervention. Granted, she could have easily died from one of the numerous surgeries she would have needed, but she wasn’t destined to die minutes after birth.

Some NTD’s are terminal. Spina bifida isn’t. Myelomeningocele isn’t.

I remember when I first started researching myelomeningocele and termination for medical reasons, and I was so angry – if I had to make this decision, why couldn’t she have had a terminal diagnosis to make things just a smidgen easier? Please don’t misunderstand me – I don’t think that TFMR with a fatal dx is easy – I just think it’s easier for observers to focus on the prevention aspect. With a fatal dx, it’s not a matter of if, it’s a matter of when.

I see when people discuss termination for trisomy 21 (DS), they are quick to elaborate all of the secondary complications that were present and are likely to show up. I do the same.

It’s one thing to gamble with my own life, but I was gambling with my daughter’s life.

It’s also one thing for the state of Texas to say “It’s morally acceptable for you to terminate your pregnancy after 20 week as long as you have a fatal dx, but we don’t recognize pain, quality of life, or the logical consequences of bringing an unhealthy baby to term.”

I’ve heard many women say that they felt they didn’t have a choice when it came to TFMR, but I think for me, the scary thing is that I did have a choice. In theory, I could have selfishly CTT, but I chose not to. I wonder if women say that to distance themselves from “elective” abortion. I don’t know. I wonder if I would have felt differently if I had received a fatal dx.

I’m just feeling a little sorry for myself today. I’m going a little crazy – my period was really weird – light and didn’t last very long, so I’ve tricked myself into thinking that I’m pregnant.

I know.

Pregnant and taking Clomid. Don’t bother telling me not to Google it – I already have. It’s so bad that I took a pregnancy test today. I’m CD 14 for crying out loud! It’s negative, of course, but then the doubts come in. What if all the pregnancy tests are defective? I went out last week with a friend who IS pregnant, and I seriously considered asking her to POAS to calibrate the test for me.

What

The

Hell

?

I know. I know. It’s craziness. But unless you’ve been this desperate, don’t judge.

Stand With Texas Women

I really wish I could have been in Austin yesterday for the rally on the Capitol, but alas, it was not meant to be. Instead, last night, I gathered up some girlfriends and we headed into Houston proper to the Hughes Hangar for a Planned Parenthood pro-choice rally.

I want to get two shirts made: 1. Ask me why I hate Rick Perry. and 2. Ask me about my abortion.

I think #2 might be a little too provocative for my Tea Party suburb, but it makes me giggle thinking about wearing it to the grocery store or a teacher workshop.

In any case, the three of us headed in, expecting nothing but traffic. We were pleasantly surprised. First thing we did was buy proper attire:

I’m the one in the middle, sandwiched by the hotties.

Then, we got the facts from Planned Parenthood:

HB2 requires all abortions to be provided in ambulatory surgery centers which would virtually end safe and legal abortion in Texas.

HB2 would impose numerous excessive and medically unnecessary building requirements on all health centers that provide safe and legal abortion. Requiring health care centers to comply with ASC guidelines, which mandates hospital types operating rooms for abortions, even for non-surgical abortions are inappropriate and opposed by doctors and their professional organizations.

My thoughts: I’ve had outpatient surgery before. In fact, all of my surgeries have been outpatient. The whole reason it’s called outpatient is because the patient doesn’t need to stay the night – in order to keep the hospital costs down. I wonder how much MORE it would have cost me over the $2500 that I already spent on the abortion? How come they aren’t regulating vasectomies in this way? Or plastic surgery? Or biopsies? Or skin tag removal?

HB2 requires doctors who provide abortion to obtain hospital admitting privileges, which gives hospitals complete decision-making power over access to safe and legal abortion.

Requiring doctors who provide abortions to have staff privileges at a nearby hospital won’t make women safer and in fact, could jeopardize their health by depriving women access to safe, high-quality medical care. In fact, the American College of Obstetricians and Gynecologists opposes laws or any regulations that require abortion providers to have hospital admitting privileges for this very reason.

My thoughts: Seriously? We already know how much the government has screwed up education – can they let the professionals who know that they are doing DO THEIR DAMN JOBS? I want my abortion to be between me and my doctor, not the hospital. I wonder if this means that if I were to go in to TFMR, would the hospital be able to refuse me? What if they say my pregnancy as an opportunity just for them to make more money since my child would be dependent on the medical community? It makes me uneasy.

I’ve also read that hospitals don’t want to give doctors admitting privileges because then they would have to cover them under insurance.

House Bill 2 would force doctors to ignore more than a decade of research about providing early, nonsurgical abortion.

This provision would force doctors to abandon the current evidence-based use for non-surgical abortion and mandate doctors use the less effective dosage, which requires a woman to take MORE medication than is needed. Requiring doctors to adhere to these original FDA recommendations, rather than the regimen doctors use today flies in the face of years of research and doctors’ practical experience.

There’s a part of me that thinks this is punitive as well. Perhaps it’s a money issue – trying to milk as much money out of desperate parents as possible. In fact, perhaps what this whole thing is really about. I refuse to believe that Rick Perry and David Dewhurst are doing this to protect women’s health, and they can’t really be doing to save the fetus, because they don’t give a damn about the quality of life that it would expect upon birth, so the only thing I can think of is that they are getting some kind of financial compensation.

I really don’t understand how a woman can claim to be a Republican.

House Bill 2 would impose an unconstitutional ban on abortions later in pregnancy.

HB 2 would enact an unconstitutional ban on abortion at 20 weeks. Fewer than 1 percent of abortion in Texas occur after 20 weeks, according to the Department of State Health Services.

This bill only has a narrow exception for a woman’s health or fetal anomaly – leaving a woman who is facing heartbreaking circumstances with no options. The bill also makes no exception for survivors of rape or incest.

Fetal anomaly is defined so narrowly that it means the baby would die after birth. That means that had I not gotten my ultrasound a month early, I would not have been able to terminate my pregnancy. I promise, if I ever get pregnant again, I will be demanding a 16 week gender scan and the 20 week scan ASAP.

I really wanted to go and give my testimony in Austin today, because I am an infertile woman who chose to terminate. There is a chance that this could have been my one and only chance at a child – and I terminated. I would rather suffer without her than force her into the shackles that awaited her.

Is it stupid of me to hope that the politicians will actually listen to what the people actually want for once?