Digital Data Refuges

A large part of my job is making scientific data publicly available. Not too long ago, I was a federally employed scientist. I’m now a state scientist. My science is the same no matter where the funding comes from. Data that I produce belongs you. It belongs to all of us. Scientific data is public information.

The following email arrived in my inbox today.

 

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Scientists are now forced to create digital data refuges?!?! What is going on?

While I’m glad that there are people creating these refuges, I more overly disturbed that they are needed.

Personhood Bill and IVF

If you have done IVF, are going to do IVF, or feel that IVF should be a tool that people should have access to to build their families with, then you should be against a Personhood Bill whether you are for or against abortion. Hell, if you enjoy or enjoyed an IUD or think others should be able to have an IUD, you should be against a Personhood Bill. You want to freeze those embryos and do PGD testing? Against.You don’t want to make miscarriages more emotionally difficult. Against. You know that it is none of your damn business how someone goes about building their family or birth control preferences but know that they need support. Against.

Did you know that a Personhood Bill has been introduced in the House of Representatives? You may have missed it because, holy shit balls, there is too much going on! Plus some of us can only stomach the news in small doses these days.

Get on it and write your representatives. Get angry. Get angrier. Then go meditate. Stress is not good for those undergoing fertility treatments.

Article about it:https://www.romper.com/p/how-would-the-personhood-bill-affect-ivf-it-hurts-couples-relying-on-medical-intervention-32739

Resolve’s canned letter you can send to your Rep.(well, you fill out some info. and they send it to your rep for you!): https://secure2.convio.net/res/site/Advocacy?cmd=display&page=UserAction&id=656

Another thing we can all start doing is talking more about our infertility and the IVF journey. Not just amongst ourselves. I know it is uncomfortable, but we have to speak up for our rights. There is nothing shameful about infertility. There is nothing indecent about IVF. Let us educate our friends and families so they can help advocate for us. So they can educate their friends and their families.

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Some more food for thought. Yesterday a friend that works for a midwife posted this on my FB comment on this topic.

Personhood bills are awful on so many fronts! In addition to what they do to abortion rights and with regards to IVF, they have also been invoked in states that have those sorts of laws on the books to allow OCS to take the newborns away from women who make decisions regarding their deliveries that are different than what doctors want for them. We learned at an AABC conference about a case in Texas where a laboring woman wouldn’t sign an “informed consent” form for a C-section immediately upon arrival to the hospital, and the hospital got the authorities to take away her custody after the birth (based partly also on finding a history of depression noted in her records and trumping that up). They have also been used against women planning homebirth if a particular doctor thinks they shouldn’t. So basically, taking rights away from women in ANY and ALL potential reproductive situations from trying to get pregnant all the way to how they deliver. It’s sickening. It makes me blind-rage-stabby.”

Second, take the time to read this post from a very brave woman that has struggled with infertility and had to have medically necessary abortion to save her life. Let’s not make this difficult time even more difficult for women.

They are people. Not a pre-existing condition.

I know a lot of people want to see the Affordable Care Act gone. I hear from them that it is not affordable. I hear that they are healthy and don’t need it. Two years ago, we were healthy too. Two years ago, I didn’t think too much about health insurance except how much came out of my paycheck to cover it. That was two years ago. Now, especially now, it is on our minds and affects many decisions going forward. I feel as if we are hindered in our options because they must include health insurance. We cannot lose our health insurance. Our crappy health insurance that argues with us about every doctor decision but in the end shells out thousands of dollars monthly for my husband’s vital medication. You didn’t live with him before he was treated. He could barely function, he was a shell of the person he was. Full treated, he can work and give back to society.

Our health system is not perfect. It was fucked before the ACA, but it is a step toward unfuckery of the system.

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Photo by Robin Wood, Daily News Miner

I proudly marched next to 2,000 fellow Fairbanksans in -15F and in spirit with millions of others who are worried about the direction our society is heading. One of the women marching yesterday was a 10-year-old cancer survivor. She made the front page of our local newspaper and New York Times in a collection of photos from women’s marches around the world. She is a person with dreams and aspirations, not merely a pre-existing condition as insurance companies see her as. My husband, her, and millions of others that have lifelong conditions are people. I’m happy for you that you and your family are healthy (right now) but have some compassion for those that drew the short end of the stick. Walk a mile in their and their loved one’s shoes. [Seriously, clink on this link and read this mother’s post about her daughter’s sign and her battle with cancer.]

Nothing Shameful to See Here

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Last year’s Christmas photo was hubby and I dressed in Hawaiin gear standing in the snow with our dogs also in Hawaiian shirts and the ducks/geese sans Hawaiin shirts. We went to Hawaii with his family for Christmas in 2015.

This year, I had to top that photo and my husband’s hand surgery in December presented me the perfect photo opportunity. This year’s Christmas letter included our two rounds of IVF plus our photo sentiments about 2016 (there is also a Bah Humbug version of the photo for those that Fuck is too much).

My mother cringed at me including IVF and the words “uterine polyps” in the letter. I asked why with her response that people don’t talk about medical ailments. Really? I have 34 years of Christmas letters written by my mom talking about my brother’s meningitis, my dad’s broken foot, and my dad’s plus my knee surgery. What she meant to say is that people don’t talk about reproductive medicine.

Infertility happens. I know, it is happening to me. It is not what I wanted, but it is what I got. Now I’m going to talk about it until it is no longer taboo, no one ever feels alone when dealing with infertility, and insurance companies step up to cover the expense. I may be talking for awhile. There is nothing shameful about infertility. There is nothing shameful about miscarriages. There is nothing shameful about menstrual cycles or uterine polyps or fibroids or vaginas or labia or breasts. It is all a normal part of life.

On that note, Fuck 2016 and onward to a beautiful 2017! Or at least a better 2017 than 2016!

 

 

 

 

Where are we now?

Where are we now? The key is when you ask this question. Last week, I was ready to adopt an older sibling group. This week, leaning toward a fall IVF round. Three weeks ago, I was content being childless and heading to Costa Rica for a friend’s November wedding and Germany for Christmas. Yesterday, we almost got a puppy.

I don’t know where I’m going anymore or what I’m doing.  I’m also not sure what I want anymore. I wanted to have sex with my husband and get pregnant. That plan has gone down in fiery flames, and we do not know where to go from here anymore. It is not an easy decision. Imagine having your heart set on Ben&Jerry’s Chubby Hubby but the store is sold out. Now you have to pick between Cherry Garcia or Empower Mint. Both good options but not the one you had your heart set. Now magnify that feeling and decision by a million. I’m there staring through the fogged up glass trying to decide which $20,000 ice cream I’m going to pick and have to eat for the rest of my life.

For now, I’ve opted to walk away from the ice cream aisle and that decision.

The EcoFeminst actually wrote an excellent blog on where I’m at right now (okay, it is about where she is, but I’m right there with her). “There just comes a point where your EXISTING life has got to take priority, where your entire schedule, budget, plans, et cetera cannot wholly revolve around that struggle. You have to live your life and not keep putting everything on hold. You have to allow yourself to be happy and to do whatever it takes to get back to happiness – or at least, more moments that make you smile than you’ve had during the battles you’ve endured.”

I’d like to think I’ll stop mulling over what next but for now, I’m not going to say one way or another what our family making plans are because I don’t know. The bees are ordered and we are talking about buying an incubator to hatch our own ducklings this spring. I’m training for a May triathlon and June marathon. For now, I am smiling and am content with our current lack of direction.

Bout of Infertility Rage

I’m weepy, irritable, angry, frustrated, full of self-pity and rage right now. My husband asked last night what was wrong. I responded with “I hate my life.” He asked what he could do to help with this. Give me a baby.
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I cannot pinpoint what has brought on this bout of infertility rage I’m currently working through. It could be the holiday cards rolling in full of happy families with their smiling children. Good for you, you had a third baby this year.
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It could be exhaustion from working three different jobs, taking care of my husband post surgery along with our animals and attempting to keep the house together while he is out of commission. An IVF puppy and cat seemed like a good idea at the time. Okay, it was a good idea.
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It could be finding out that not only did our last fertility doctor miss uterine polyps but also hypothyroidism. Now I’m mad at myself because I didn’t demand more testing. What? WTF because that is what I paid him a fuck ton of money for. To be my advocate and get me a baby.
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It could be that we are trying to figure out how to pay for yet another few rounds of IVF. I raid my retirement and perhaps have nothing to show for it except bitterness. If this gamble doesn’t pay off, I don’t think we can afford any more fertility treatments or even adoption or retirement. Just a therapist to help me to come to terms with being barren, never having children, and never retiring.  That this is all that my life amounts to.
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Fertiles that are reading this may be thinking I’m being over dramatic. My response today to you is “Shut your fucking piehole.” On FB, someone asked why people Infertiles can be so insensitive to Fertiles. Below are two of the several comments that struck a cord with me.
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“Infertility is all consuming. It’s soul sucking. It’s something a person can’t even begin to comprehend unless they’ve been through it. It makes most of us jealous and spiteful people. … I couldn’t go to baby showers. I judged when people complained about their kids. It is so hard to move outside your own pain and grief…”
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“… just emerged from a verrry dark time after an infertility diagnosis, seeing those [birth/pregnancy] announcements were painful. … I removed expectant and new mothers/fathers from my [FB] newsfeed because I could not handle the joy in the midst of my immense darkness and pain.”
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I have the right to be angry. I have the right to be frustrated. I have the right to cry. I have the right to be irritable. I have the right not to be happy for you right now. This week, I’m struggling at working through my own pain and grief. Possibly next week too.
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We’ve Always Made it Work.

The take-off was aborted, and we rolled back to the gate. Once parked, my husband had grabbed the vomit bag and bee-lined it for the lavatories. In an hour, the mechanics fixed the “door ajar” light with some duct tape, and we were in the skies.

My husband took the row across from me, shivering and attempting to sleep. I, on the other hand, watched the free in-flight entertainment (three hours of home improvement shows) and indulged in the cheese platter and two glasses of the complimentary wine.

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In the seat in front of my dying husband was a young woman with an 8-week old baby. I wondered if I would be able to work, take care of all of our pets, our micro farm, our rentals, my husband, AND a baby. My husband is not lazy by any means and wants to be a true partner. His disorder prevents him sometimes from doing that. Early that day, he had become so dizzy due to low blood pressure (medication issue) that he fell in the garage, breaking glass and bruising up himself pretty good. With his new medication, we have fewer bad days, but they still happen. We all have those days where we cannot function. My husband simply has them more frequently and without notice.

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The plane landed an hour later than planned at 11:30 pm and I navigated my husband to the hotel for a few hours of shut-eye before his 9 am apt. the next day. That night and the next day, I lugged our suitcase upstairs, in and out of cars, and through downtown Seattle. I know people looked at the 5’4″ women manhandled the suitcase while a 6″ strapping man watched. I know what they were thinking of him and of us. It is a subtle reminder that you cannot judge a book by its cover. He could barely stay upright, yet he never complained. We spent the next two days pretty much shut into the hotel within five steps of the toilet. Not only was his medication off, but he also had either the norovirus or food poisoning. Our fun and romantic few days in Seattle before his surgery were squashed. It was disappointing, but it is the way life goes. Instead, I got a lot of computer work done. By the weekend, he had improved, and we were able to spend the weekend with one of my friends as planned. We got one romantic dinner and evening before his surgery yesterday. We’ve always made it work.