An undefined form of Epilepsy

First, I'd like to apologize for the radio silence. As you can tell from the title, a lot has been going on. This is bound to be a long post, although it surely won't cover everything....I've been writing and re-writing this for weeks, so we will see what direction my writing takes me and then I would like to keep up with my posting.

Please be warned- I will be talking about what Epilepsy can look like, and if you are sensitive to hearing about children being really sick, please avoid the area surrounded in *****. It is important to me to "tell you like it is", but it isn't easy to write, and for most, it won't be easy to read. 

On April 4th, not long after my last post, Shrimpy's seizures came back. Her EEG the week before had been completely normal, so we decided, together with her doctors, to start (very gradually) weaning her off of the barbiturate. The first seizure was "just" focal- so just her face and mouth. I heard the sound her mouth makes when she seizes- a sort of clicking sound with her tongue, and I was instantly ripped out of my sleep. I took her out of her bassinet right next to the bed and held her and talked to her, while filming it for the doctors. Since it was a focal seizure, she was herself again afterwards- so I gave her her medicine as planned and tried calling the doctor. Unfortunately, it was busy, and while I was trying to nurse her and call them, the had a generalized seizure- so her whole body, including her lungs. As I watched her lips turning blue, I figured "fuck it" and called German 911. While I spoke to the operator, it stopped, but I had them come anyway in order to drive us to the hospital.

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In the next two days, she had 7 seizures. They returned her medicine to its previous dosage, and for the next 4 days, she had no seizures and was able to nurse again relatively quickly. We went home and had one wonderful night as a family. The next morning, she had another, and we went back to the hospital, where they told us, as long as she didn't have another, that we could continue with our weekend. We had just arrived at a meet-up for the parents and children for the participants of our birthing preparation class when she had another. In the next 4 days, she had over 40 seizures, reaching a max of 15 in 24 hours. All lasted about 2 minutes, and all led to a bad oxygen saturation level. Some doctors wanted to see what her level would drop down to before administering oxygen- but Broom and I were not having any of that and always used the oxygen- because who the hell wants to test that?!?

Her personality was gone, her muscles had no tension, she was too weak to breastfeed, and could hardly stay awake. They took blood, and her face made the crying actions, but she couldn't fucking cry! She was basically in a coma- and it took her 45 minutes to drink a bottle. It was horrible, and we began to worry if our Shrimpy would make a comeback.

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During our stay in the hospital, they completed a new round of tests, including an MRI. They discovered that the seizures begin focally and usually turn into a generalized seizure. Her heart, brain, and kidneys (she has 3- because she is cool like that), all show no signs of damage. Her metabolism tests show no signs of a disorder, and the genetic testing for benign infant seizures showed an abnormality on one of the genes, but both tested negative.

Diagnosis- undefined Epileptic seizures.

Not entirely unexpected, and it could totally be worse- but still shit in a lot of ways. But, we are dealing- and her meds are good at the moment. Currently, her last seizure was on the 17th of April. Next week, we will begin working with the doctors to gradually reduce one of her 3 meds- because 3 is a lot for a 4.5 month old.

I am scared shitless, but I know it is the right thing.

From all of this, I can tell you that I know the following without a doubt:

- Shrimpy is SO incredibly strong- she and I got our nursing back on track really quickly, and she is ahead developmentally ahead at this point- something I am super proud of.
- Broom and I are a solid unit- if anything, this has made us even stronger.
- Modern medicine, the health care system, and parental leave program in Germany enables us to have time to deal with this as a family.
- Relatively speaking, if Shrimpy "has" to have an illness, at least hers is a common one, controllable with medication. She can have a normal life, and can develop normally, too.

So, friends of the internet- I think that that is enough for now. I will try and follow up more regularly, especially since I have a lot to say on the subject of Epilepsy and everything else that is going on, so I hope that I can find time to write again soon.

Take care of yourselves!

And then I had my last day at work for a year...

...Germany has a lot of interesting programs, including awesome parental leave. I saved two weeks of my (cough, 30 days) of vacation to take before the almost mandatory off-time for moms 6 weeks before the due date, and 8 weeks after. After this time ends, there is a somewhat-complicated program where the parents can take time off. I am taking 12 months, and Broom is taking 2. We still get between 65 and 67% of our previous salaries, which makes this feasible. Exciting and weird to be off for so long, although I am proud to say that I didn't have a problem leaving work behind.

The first week off, I had doctor's appointments and then we went away to the Baltic Sea for 4 nights, which was loverly. Daily walks on the beach and bubble baths were just the thing! I do notice though, that baby is in "start" position with his or her head already quite low in my pelvis. The daily movement has been good though.

Currently, I am working on sewing cloth baby wipes and burp cloths (my MIL is dating a laundromat owner, so we had waaay too many towels, so I cut them up based on our needs and am just finishing the edges). Other projects I want to do are: a blanket / duvet for the stroller, a collage out of cloth for Shrimpy's room, and a cover for the changing table extender we are making.

Feeling like things are coming together, but will feel better once everything is as in order as it can be (including the mountains of paperwork we are going to have to do since we don't have all rights and the whole bi national issue, *sigh*).

From the health perspective, it looks like the gestational diabetes thing really was just a fluke. I still have to test sporadically for the next 2-3 weeks, but everything has been fine. My gyno thought I might have a UTI, but didn't say anything since I brought in morning urine, so I would guess that things are fine there. She just said last time that she wants to use the fetal heartbeat monitor every two weeks starting next week, and I was too much in a tizzy to ask why, so I am going to do so and am thinking of declining since baby doesn't like being monitored. Also, she now seems worried about the polyp-y thing on my cervix, although she already said it shouldn't pose any problems for birth. She talked about sending me to a specialist/asking a colleague for advice.

Needless to say, this was one of those visits where I got overwhelmed and didn't ask enough questions here, so I wrote them down for next time. As far as I am concerned, as long as my cervix can still open, I am still planning to go to the birthing house (and the midwives are super-calm). If she is concerned about it being cancerous, then she should swab it for testing, and we can deal with the results after Shrimpy is here if we have to. I told my mom about me being a little worried that that was what she was getting at, and she waved it away (surprise!), so we will see.

I will probably run everything past my midwife before my gyno appointment and go from there.

Happy Thanksgiving to everyone celebrating tomorrow!

Tempus Fugit

I am so thoroughly in the moment and enjoying being pregnant, that every time I think of blogging, I think that it hasn't been "that long" and then I see that another month has flown by.

Sure, there are some moments that aren't as enjoyable as others, but of course I am going to be uncomfortable sometimes- I am growing a person who I am carrying around in my womb. I have been trying to walk a fair amount, do prenatal videos from YouTube, and go to the gym to help with stiffness, etc. that is bound to only get worse :)
It can be hard to get motivated (and I haven't been denying myself naps, either), but once I do, I know it is what I needed.

On the preparation front, my sister and sister and law are organizing an alternative American baby shower. Since shipping costs and custom fees would make gift giving more difficult and possibly quite expensive for all, we are going to do a Facebook group with a limited Amazon Baby Registry (things where we would be glad to pay the customs fees- mostly cloth diapering supplies- since some brands are just really hard to get here) for those who would like to send a gift, and otherwise encourage people to give my mom a check for my American bank account. That money will offset what I wire monthly for my school loans and enable us to buy things for Shrimpy. In the group I can post pictures of what we have purchased and "attendees" can guess when Shrimpy will come, gender, size, weight, etc. and winners will get a gift in the mail.

I know that such a baby shower isn't common here, but my family really wants to do one, and I am really lucky and grateful for that! This month, we will be organizing things for my brother in law to help us install- anchors for book shelves, mounting a mirror that we had just leaned in the hallway, shelves for some plants in the living room, etc.

Sometimes, I have to fight the instinctual urge to "have it all done, right now!", but rationally (which I haven't been all the time- but luckily, my mood swings have just been mostly weepy-fits), I know we have time.

I just can't wait to have everything ready, then I can spend the time that I am off work before the baby is born to make the finishing touches and to step up my meditation. I feel pretty zen about my mental preparation for labor, and feel like we have excellent care. As long as everything goes normally, I will be giving birth in a cozy apartment set up just for labor with women I respect and trust. Our relationships are building with each appointment, and I am confident that our baby and my body know exactly what to do and the fact that our midwives trust that as well is part of the reason we chose to have an out-of-hospital birth.

Less than a month and a half before maternity leave starts!

Busy Bees

We have been all over, it seems!
An alternative street festival in our city, Pride in Berlin, and speaking with journalists about discrimination.

Whew!

Pride last weekend was really cool. Friday was kicked off with a Dyke March through the city (which we were really late for since we had to set our tents up at our odd but nice campsite). 1,500 dykes and dyke supporters in a really non-commercial march for more visibility and rights. It was really neat! Afterwards, there was a gathering and some dancing- although I just gathered- my work day had me too worn out to dance.

The big CSD parade on Saturday was amazingly huge- and we only watched a small part of it! According to 1 news source, there were 700,000 people in attendance. It was neat to watch, but I am glad that we did the "lite" version, as lots of standing and walking in the sun is not my thing (pregnant or not). Meeting up with friends afterwards was really nice.

 We also decided to answer a call for people to talk to journalists about discrimination here. I can't go into detail since it could later make this blog not so anonymous, so let's just say that I am excited that we decided to be brave despite the fact that it could be sensationalized. Hopefully, the subject will get visibility either way. This is an exciting time as far as the possibility of more rights go- here, and in the US- although I am fully aware that these changes could take place long after Shrimpy has made his/her appearance. 

In the meantime, I've still had symptoms that come and go, like waves. The nausea only seems to come when I am tired and hungry, which is good (although I do go from "I could eat" to "OMG feed me" in like 20 minutes...and then I can't eat that much, lol.). The round ligament pain has started, and I am glad that I knew that this happens- as it could otherwise be quite a scary sensation. I've got a bit of a mix of the "mask of pregnancy" / acne / rash thing going on on my face as well as increasing back pain- but movement helps. My "bloating" doesn't seem to ever go away completely now, and part of my belly is hard...so it is probably the start of my bump. I've made plans to check out thrift stores with my sister while I am home to get maternity clothes. In the meantime, dresses and my belly band are my friends.

A little hard to believe that I am 11 weeks today, and that our next ultrasound is next week- but I will be glad when we have that important milestone behind us, that's for sure.

The end of next week I will be flying to the US for almost 4 weeks, so by the time I am back, it will be time for another ultrasound, among other things!

Body image and baby making

I have come to the unscientific conclusion that Germany is more critical about body image and what many Germans consider to be fat. It is also not considered (as far as I can tell) incredibly rude to call someone fat or talk about someone's body. There is even a show on called "The fat guy".

As a result, anyone who falls out of the societal norm is often judged for their body shape.
Here, I have heard people refer to me as being large or any other "nicer" term for fat, and I have been mistaken for being pregnant at least a handful of times (well, those were the number of times they asked me or said something about it- but now they would be right, ha!).

During the course of this journey to conceive I have made a conscious decision not to concentrate on how much I weigh. Priority number one was and is getting/staying pregnant and staying healthy. I do weigh a "lot" for my height- even though I think that with the exception of my small belly and ginormous breasts (thanks, genetics!), that my frame is actually on the small side. I am an average height and very strong woman- lifting weights makes me feel powerful and good (and, well, pectoral muscles are important for these girls I've got) and seeing my leg, arm, and back muscles makes me feel sexy. I am healthy and happy.

I'm trying to mentally prepare myself for unwanted comments once I start to show and am already giving  myself pep talks about how amazing the whole process is here- because I've heard people- including coworkers call pregnant women fat. (And the person who said it is friends with the woman carrying twins! I told her that if she was my friend and talking about me like that that I would hate her and that she should have twins and see how she felt/looked. My mouth got away from me there...)

But no matter what anyone says, they can't make this process any less amazing- and I will surely feel free to give them a piece of my opinion when appropriate as well. Body image is such an important lesson that we are taught by our families, and our family will certainly have that as well as the obvious two moms thing to contend with. I have come to the firm conclusion that both areas require a strong pair of shoulders to hold your head up high, and I plan on leading by example.

Happy Friday!

Last, but not least

On Friday, I got my follicles measured after being on clomid again from cycle days 5-9. My super-nice gyn said "Those look great! It has really got to work this time!" Turns out I reacted quite well and had 4 follicles, (2x 15mm, 1 14mm, 1 13mm). The clinic told me to go for another ultrasound on Monday and that I would likely have an insem on Wednesday.

Broom and I made the hard decision that this IUI will be our last due to frustrations with our clinic and the fact that the probability of us getting pregnant with IUI won't be going up with additional tries. We would rather put our money into IVF if this next try doesn't work due to the increased success rates.

It isn't easy setting such a limit for us, and I have to fight back the guilt and shame accompanied with it. Some days, it is easier than others- and I am trying not to get my hopes up too much for this next try. Luckily, I also know that my gyn is trying to support us the best she can and said it would be no problem to write me off sick for IVF.

Regardless of how the next try goes, we will most likely be dealing with at least an egg retrieval in our near-ish future, since Broom is seriously considering harvesting her eggs for use in me at some point. We are currently researching foreign clinics since egg donation isn't allowed in Germany. Only time will tell if they would even consider implanting the eggs into me (if we went this route, we would both harvest at the same time and use the same donor to make all of the embryos that we would use and freeze at once and possibly use a mixture of her and my eggs in one cycle).

If/when we start steps for that, we will probably have to take at least a 3 month break in order to save up for the process. It is a daunting sum of money, but I know it will all be worth it. Broom would like to save up longer- but waiting makes me uneasy since I feel like our dream is stagnant.

We will just have to see what the next few weeks bring.

Appearances

Many Germans are all about "looking the part" and appearing to have it all pulled together.
So much so, that those who work as maids will often wear nice clothes on public transportation, change into their work clothes at work, and back into their nice clothes for the bus ride home.

The same is seen in the gym- people come in after work in their work clothes, change into workout clothes, and then put back on their work clothes (If these people always showered in between, I would get it, but many do not since I am at the cheap gym where you have to pay to use the showers.). All because those clothes aren't appropriate for going out.

My in-laws are similar, dressing up to see one another- all the time- and criticizing us if we don't.

I hope I never overrate appearances, because there is so much you just don't see.

The hurt of someone who has just lost a loved family member, the worry of someone rushing off to an interview, the depression of someone struggling with the disease, all of these things can be hidden by looking "normal" or "ordentlich" (orderly). It is so freeing to know that it doesn't matter what appears- you may be a "straight-looking" woman who gets weird looks at bars and clubs when you are with your wife- but YOU know who YOU are and often, appearances don't reflect that.

Right now, I appear to be putting all of my energy into work, but I am holding back in the hopes that the bloodwork they drew today will let me know on Friday that we can begin trying to become pregnant again. And that's where I need my energy.

Politics

Sometimes I have a real problem understanding how things work in our society, and wonder if it wouldn't indeed be easier if we all insisted on a work/life balance and honesty.

To not lead a family on who is open about the fact that they would love to grow, but have had a setback on the job front. To not expect limitless numbers of overtime for the good of the company who won't appreciate it anyway, especially not if you don't take work home.

This is a game I really don't want to play, I left the political commercials at home (one great benefit of being an expat), and life really is way to short to kill myself with work for a job that isn't even helping people or producing something that saves lives- it really isn't a life-changer if another widget isn't produced, is it?

This leads me back to the whole "What do I want to be when I grow up?!?" topic. A part of me is pretty sure that I will never really know.  But one thing is for sure, once I pay off the education that got me here, I will be looking for a job where the overtime makes a difference and getting THAT widget off the production line really maters. For an added bonus, it would be excellent to have management that doesn't belittle the work you do put in, or make half-assed decisions that no one understands. But that might be asking for too much.

Politics are unfortunately everywhere.

Biodanza

I have recently taken up Biodanza.

At first, I knew absolutely nothing about it, although its description from the invitation from an international group I am in sounded pretty "hippie".
But for some reason, it sounded like something I had to do.

Completely unlike me, I didn't even Google it first, I just showed up! (I googled only later :) http://en.wikipedia.org/wiki/Biodanza)
Automatically I was greeted with hugs from most, more relaxed handshakes from others.
It felt like they wanted to really get to know me from the first moment onwards- something that isn't common in German culture.
It usually takes awhile to get people to warm up to you- and it certainly isn't a given.

The introduction our teacher gave (in English too, as one of our group can't speak German) had me a little worried, even more so than when I realized that we were going to be dancing barefoot!
But the dances- however unexpected and "unusual" seemed to release all of my work stress and let me concentrate on me and letting the movements be me and bond with other people in the group.

In short, I am now a Biodanza junkie!
I haven't had such a cozy group feeling- like people really take me as I am- since my years in the youth group back in the US.
Only after attending did I realize how I truly missed this closeness that comes so quickly in American friendships- but this is something that doesn't feel like it will fade overnight as those quick "BFF" American moment sometimes do.

I think next time I will tell the group again how much their openness and true care has helped me feel even more at home here, even after so many years and adaptations to the culture.
In the past few weeks, I really feel like it is this and Broom that has kept me from giving in to the Burnout symptoms I've been having and put everything in perspective.

Thank goodness for whims!

How to Advertise an Anonymous Blog?

I have been "toying" with this topic for awhile now.

Seeing as how I would love to live off of my writing one day, deciding that with blog entry number 11 miiiight be a little early.

That, and I am contractually obliged to get any job that I do outside of work that is somewhat official approved by my boss. Germany is no joke on that one- so if one day I was SO incredibly cool that people wanted to sponsor my shit, I'd have to get a piece 'o paper signed first.



Oh, the documentation!

All of that aside- how do you promote yourself and your writing without people catching on that it is "you"? You can't exactly post it on your own Facebook wall in the hope that no one draws any parallels.

None of that "A friend of mine wants to know if you can get pregnant by X and was too afraid to ask. It isn't me, it is for a friend" crap.
(Everyone knows it is really for you, and you should be doing what all the other teenagers are doing and just google that shit anyway!)

Not really like Superman glasses- is it?

So, anonymous world- what do you do?