Sunny With A Chance of 100 Degree Melting

I'm melting. September in Los Angeles is hell. One hundred degree weather hell. I am melting. My pregnant body is already so damn hot and this heat is making me want to die. So in the spirit of whining but in a funny way here is my List of My Pregnant Body Hates Me. It is all the stuff no one told me about and the silly dumb complaints I have that mean nothing in the scheme of things. I hope you laugh.

1) My boobs. They're huge y'all. Size 36G huge. They shot up from a 36DD to a 36G. There isn't even milk in there yet! I will poke someone's eye out soon and probably suffocate my son with my boobs. RIDICULOUS. And finding bras, HA! Specialty orders and they are not cheap. Damn too huge boobs.

2) My son is karate kicking my insides or doing backflips or flips turns off my uterus. I think he thinks he's a ninja or a merman but that shit hurts. I have yelled at him for being a dick. I started with the "ow!" and "please don't kick mama" and am now onto "knock it the fuck off, you're being a dick". He's not even that big yet, only pomegranate sized and he likes to hit the same damn spot every time. He's a ginger jerk, I can already tell we're going to have issues with this little dude.

3) The backne that I have is disgusting. My back looks like 16 teenagers sought revenge curses on it. Cool it hormones! And it's not my face, it's my back and shoulders. I even found a pimple on my arm and my leg. What the what?! Get it together body!

4) There is WAY too much discharge happening. Sorry dudes (& those ladies who don't know about this grossness). I feel disgusting all the time. There is no control. Just gross. Body-WHY?! Stop that nonsense immediately, please!

5) I no longer have control over my bladder or bowels. I sneeze and sometimes pee comes out, no control. I wake up in the middle of the night with an urgency to pee, I have no control. I fart and there is no option of holding it in, I have no control. I have had control over these areas of my body since I was 2 or 3, now at 28 I am having issues. UGH.

6) I am super dried out and yet secreting weird moisture. My nose, throat, and eyes are dry like the desert. I cannot wear my contacts for more than 4 hours without them feeling like sandpaper. My nose gets bleeds from how dry it is sometimes. I wake up in the middle of the night to pee and then realize I can't swallow because my throat is so dry so I am choking and peeing at the same time until I finish peeing and can get a drink of water that will inevitably make me have to pee again in 20 minutes. My skin is dry, my hair is dry, my nails are dry yet I am sweating bullets and again see number four. Get it together body!

7) I am not a weepy pregnant lady but a ragey pregnant lady. I have pals and relatives who told me they would cry at the drop of a hat. For me and my body it is rage, 0 to 100 mph rage. I am full blown ready to choke a bitch in 2 seconds when people are rude or stupid or asshats. It's bad. I may say things I shouldn't. I drop a million curse words in a second. The filter is off people and look out is all I'm saying.

8) I haven't craved food but I crave booze. This may be because I am Polish-Irish-Cherokee and have had some alcohol issues in the past. In college I drank a fifth chased by a bottle of Boone's Farm wine for a year and would be just a little drunk whilst most people would have had alcohol poisoning. I'm not bragging but I can count on one hand the number of times I've puked from drinking and on the other the number of times I've had a hang over (counting both it's less than 10). So my pregnant body isn't craving any foods it is craving Bloody Marys, bourbons on the rocks, whiskey sours, Polish Potato vodkas, vodka crans made like a gimlet first then add your dash of cran, etc. My go-to joke is that it's hard to be an ex-drunk on forced sobriety. It really is though. Honestly, I do not drink a lot anymore. Joe and I may have a beer or cocktail once a month/month & a half. But now, now that I can't have a drink it's all my preggo body wants. Seriously body, why do you hate me?! I'm not drinking anything, not even a sip of anything because as Admiral Ackbar said "it's a trap!"

9) I am either super exhausted or super energized, there is no in between. I am running around with loads of energy and am super woman or I am crashing and napping and super tired/cranky. No idea which it will be. Lately it's been mostly energy but then middle of last week it was mid-day nap session time. C'mon body, get it together.

10) I am too big for normal pants but too small for maternity pants to stay up on my body. At 21 weeks I really thought that the maternity pants would be fine but they keep slipping off my butt. I spend the day pulling my damn pants up. But no way can I wear the regular ones with the belly band anymore because I feel like I am being squeezed like a tube of toothpaste. Body, get bigger or smaller so I can wear some damn pants already! Jeez.

11) I am too damn hot. Not as in sexy hot but as in my temperature is at boiling. I will be in 66 degree air conditioning and sweating bullets. I sweat when I swim in the outdoor pool. The pool is set in the 60s, I am not swimming fast (I have no oxygen as this child steals it all so I breathe every other stroke which means NOT fast), why am I sweating so hard? I want L.A. weather to die. September why do you have to be the hottest month of the year?! WHY?! Please fall get here because my body temp hates me and is trying to boil me and my unborn child alive! I am not built for this weather, I am a pasty-ass ginger why is it so sunny and hot? For the love of all things stop the heat! AHHH!

So that's it (for now). My body (& son) hate me and are trying to kill me. Seriously. Not really though. But yes. Don't get me wrong, I am really loving being pregnant and all the cool/weird/amazing things that are happening as I expand and I love my son. Please don't think I don't. Just also know that the above eleven items are annoying as crap or painful or annoying as crap. Also please know that these are slightly exaggerated to make you laugh. Mostly facts, just told in a funny way or with over exaggerated emotion for comic effect. If you didn't get it well, I guess you're lame (another joke guys). Have great weekends chickens!


 

Sunny With A Chance of Read This!

This woman, seriously, just read this.

For real, just read that.


 

Sunny With A Chance of It's A...

So the gender reveal, it's here! YAY! We are so excited to show you our pics. The shoot was a blast, even if we did lose 7 of our 9 balloons immediately and Joe and I got miffed at each other. Thank you to my college pal Kate Compton for our lovely shots & for making us laugh and forget the damn balloons and be silly and in love with each other and our baby. You're the best Kate! Without further ado, we're having a...

 

So it's a BOY! We're excited to meet our little man at the end of January [here's hoping my water doesn't break on stage during my Second City graduation show but if it does I know everyone will say "yes, and" to it ;) ]. Yay for little dudes!

Sunny With A Chance of Catch Up

Sorry for the delay in posting. I needed some time & space away, to be in my real life for a bit and to sort through my emotional crazy ridiculous brain. So here is where I am.

I am doing better emotionally with all this. I am starting to feel a little less anxious & worried about the baby and trying to give myself the space I need to just feel this and analyze later. Therapy is helping loads, yes I'm in therapy and it's amazing. It's a safe space to say anything and feel anything and talk through it. I am so thankful for that outlet. I am still sorting through all the anger and sadness and feelings of loss, they're all still there and sometimes they hit hard. Mostly though I am starting to get excited about meeting our nugget in January. I am trying to sort through my feeling on more natural born kiddos in the future. I still don't know and that is okay. I am letting myself feel okay about not knowing because I really don't have a clue what I want to do. I am just trying to do the next right thing. I am using up all my improv skills in real life by just being in the moment, by listening (to others & myself), to saying yes when I can and running with it, and to not predetermine or pre-plan anything. I am just going with it. We shall see.

I also just want to thank those folks out there who have supported me & chatted with me about this a million times and still talk to me about it. I still am processing. I still need to discuss. I still need support and love and non-judgement and it feels good to talk to people. Those who are there in this Fragile X struggle as well, those who are important people in my life, and those who will listen without judgement no matter how well they know me or not. Thank you to all of you.

Thank you to the pals & relations who have already started our little collection of baby clothes/items too. Anna, Rebecca, Hep-you gals are awesome. Thank you! Cloth diapers, baby clothes, re-usable wipes, a baby bath-y'all are freaking amazing. Thank you. For serious.

On to the not-so-heavy stuff: I am back in improv class in my last level of the conservatory program at the prestigious Second City and I frigging love it. It is 3 hours every week where I get to play and be silly and am encouraged to explore a million characters and emotions and I LOVE IT. I needed it I think. It just feels safe and fun and silly and amazing. Plus my damn brain gets to shut down it's overdrive and just be present in the damn moment. That is so hard for me to do in life. Honestly my brain is like a computer with a buhjillion tabs all open and running at the same time or if you took every road in the United States and every car was a thought going all at the same time piled on top of each other. Class forces me to shut everything the hell up for 3 hours and just focus on the person or people I am playing on stage with. IT IS AMAZING. I love it. It is a sacred awesome space for me. Thank you class. Thank you Second City. For realsies.

I am sitting part time for some friends kiddos whom, I must confess, I adore. They're the best. I really love them. I love that 3 days a week I get to hang with these two kids. It's awesome. I love kids in general, their inquisitiveness, their perspective, their truths. It makes my whole day. I am also mentoring with an amazing non-profit organization called Young Storytellers here in L.A. We go to schools that don't have a lot of arts program funding and we mentor for an hour a week (for 9 weeks) the kids to write their own screenplay. Their words, characters, stories. These kids and this program is amazing. I'm only a week in and I am already so stoked. At the end of the process professional actors perform their scripts for their school & parents and the kids get the red carpet treatment. It's so encouraging and these 4th & 5th grade kids who started so shy at our last session by the end of the hour some were already starting to come out of their shells. I am so excited to be apart of this.

I feel like class & working with all these kiddos is helping a lot too with the easing of my heavy heart. It gives me something else to focus on for a bit, it makes me feel like I'm creating and helping foster so many great things in the world. It makes me feel a little less "woe is me" and selfish and a little more "what can I do to better the world a bit?" even if it's just making someone laugh for a few minutes. Helping lighten someone else's load with laughs, or encouraging kids to write or find their voice, or helping kiddos to learn through play-that helps me. More than I can say. So I am very thankful for these things in m life right now.

I am also thankful to Joe. He is just my home and safe place. He is so excited about our baby and being a dad, he just loves me and this baby so much, he makes it all feel okay. I just know he'll be there and that's what I need. He's my MoneyPenny and I love him. I could never be the James Bond I need to be without his support (even if he thinks he's the James Bond-silly doodle). I love that nerd, so damn much.

So that's it for now. I'll post the gender reveal pics tomorrow. It was a fun shoot! Hope you're all well dear chickens!


 

Partly Sunny With a Chance of Hopeful Weepies

I found this the other day. It made me stop because it is kind of like this, finding out I'm a carrier for Fragile X was like expecting to have a certain life, expecting a certain type of pregnancy, expecting certain kinds of kids and finding out I am somewhere else altogether. Not somewhere bad or horrible but somewhere VERY different than what I had planned or expected. So it is a loss. It might also be a gain and a purpose. My friend Dionna told me that maybe this would be my calling after I process my own feelings about this [she suggested this after hearing me rant and rave about how mad as hell I am that we don't know very much as a populous about Fragile X and that not every state automatically tests for this like it does for other things like Cystic Fibrosis, Muscular Dystrophy, and Down's Syndrome]. Maybe she's right. For now though, this explains my head and heart pretty well.

"WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland."




Thanks to the archives at our-kids.org for this poem. It helped, a lot.



 

Cloudy With a Chance of Crazy Train

I got a call Friday morning that woke me up from sleep. It was my genetic counselor calling to tell me the preliminary results from my amniocentesis. She told me that our baby inherited my carrier X chromosome, that the mutation only went up by one repeat though (I have 58 repeats and our baby has 59 repeats). She said that it was good news, not the best but good news. She warned that as a carrier there comes risks & issues. Females carriers have a 20% chance of premature ovarian failure over the age of thirty (this includes me by the way, I could have premature ovarian failure). That in males they definitely pass on this X chromosome to their daughters which means grandchildren could be carriers or have a full mutation. In both males & females over the age of fifty there are increased chances of tremors, seizures, short-term memory loss, and early onset dementia. These are not the things you want to hear or think about. To say I had mixed feelings is an understatement.

 I felt a rush of relief. I felt a rush of fear. I felt a rush of gratitude and anger and sadness and elation and everything else under the sun. This was good news, not the best though. Not the best. Risks and issues. There's an increased chance in carriers for anxiety and depression. I think the reason I'm double jointed and hyperextensive in all my joints is being a carrier. Bigger forehead and ears that stick out, I've got those too. Are they FXS related as a carrier? I don't know. I was told that sooner rather than later I need to decide if I want to have more kids, as my ovaries can stop working. Not I've run out of eggs as in menopause style but that they literally shut down and so I lose all those potential eggs I have already.

It's really hard to talk to people about this too. Everyone immediately says things like "this is great, the baby will be perfect, you have nothing to worry about now" or "try not to think about all that, that's in the future, there could be loads of medicine and a cure by then" or "you don't have to decide right now about kids, everyone says how hard pregnancy is but once that little baby gets here it will all be worth it, you'll want more I know it". To all these things I want to scream "SHUT UP! YOU DON'T KNOW WHAT YOU'RE TALKING ABOUT!" and I know how harsh that sounds. I want to acknowledge how lovely and supportive people are being, they truly are and my heart is SO grateful beyond words for it. But, there is also a difference between the best and good news, there's a difference between silly worries and legitimate medical fact worries, there is a difference between a "normal" pregnancy and mine, and I DO have to decide soon, and I do need to talk about it now, and I can't wait and not think of it until later because there may not be a later for me and my ovaries. That is where I feel so frustrated. IT IS DIFFERENT.

And I get so angry. So damned angry when someone tells me not to feel how I feel. I am justified in feeling every way I feel because I feel it. That's the only reason I need. I would never tell anyone not to feel any way about any thing because if you're feeling it, you're feeling it for a reason and whatever the reason you're justified in it damn it. Don't tell me how to feel or think. Don't tell me not to worry or discuss. Don't tell me this is like what every other parent feels, it's not. Yes, having my boobs shoot up to a cup size of G at only 4 months sucks, having areolas the size of silver dollars is gross, having a constant discharge in my pants is disgusting, the acne ALL over my body repulses even me, and my nails and hair aren't growing better, and I cry and am angry all the time and feel insane. Yes, all of those things suck, a lot. Pregnant ladies are awesome for going through what they go through. But, and I may sound like a jerk here, BUT all that shit doesn't fucking matter to me anymore because this is SO MUCH BIGGER. So much more. And it's overwhelming. There's still loads to think about, to decide, there's still issues and risks that may pop up, there is still just so much.

Plus, and even worse for a pressure-producer like me, every decision feels like it's on this immediate timeline and then I pressure myself internally to make it faster and these are not fast decisions people. I know I should breathe and enjoy this pregnancy and wait until the baby is born BUT I also have to think about if I want to go through this hell again. Can I feel this way again to have a natural child? Can I handle an amnio again? Can I handle all the testing and waiting again? Can I handle the stress and the not knowing? Am I ready to give up having more natural children and just adopt? We wanted to adopt anyway and have a big mixed family but is this the better option for us now, just adopt? Should we try to save up $35k+ for IVF & PGD testing to guarantee embryos with my good X? Do we get an egg donor? WHAT DO WE DO?! Decide sooner rather than later, oh by the way it starts at 30, you'll be 29 when you deliver so you should know pretty much by then. AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!

I know that a lot of this is internal pressure. I have always put a lot of pressure on myself. I am trying not to do that. I really, really am. I also recognize though that I need to precess this. I NEED TO. I am trying to process all of the stuff that comes with me, myself being a carrier. The stuff that possibly comes with my body, my ovaries, my future mental capacities, my future physical capacities, my possibilities of future children, who I am physically and mentally today and are they related to being a carrier, all of that. Realizing that things I considered as "guarantees" in my life aren't anymore. I am also trying to process for the child within me all of the stuff that comes with the fact that they are carriers. Their future mental capacities, their future physical capacities, their possibilities of future children, who they will be physically and mentally and will they related to being a carrier, all of that. I am also trying to decide and process for the possibility of other future natural born children I may have. It.is.a.lot. A lot, a lot. I'm trying to give myself time and patience and love and reminding myself to be grateful.

But also I am pissed off. I am sad. I am mad. I am enraged. I am fed up with the medical industry. This is the MOST COMMON form of genetic disability and no one knows about it. 1 in 260 women are carriers and 1 in 800 men are carriers and no one knows about it. There are clinics and support groups across the nation (and world actually) and no one knows about it. It's more common than childhood diabetes (About 1 in every 400 children and adolescents has diabetes [http://www.diabetes.org/diabetes-basics/diabetes-statistics/]) and no one knows about it. It's almost as common as muscular dystrophy and cystic fibrosis and yet NO ONE KNOWS ABOUT IT.  I'm not making this up. It's all over the place it's just not talked about like CF or MD or Autism or Down's Syndrome. And I don't know why that is. I really don't. I read the following things like this and this and even this and have to wonder-HOW ARE WE NOT INFORMED AS A PUBLIC ABOUT THIS?! Why is this so unknown, misdiagnosed, etc. when it is the most common genetic cause of disabilities? I get really angry about it. I really do. I know that I am a bit skewed in my view of the industry that is medicine anyway after my ten year spine battle but it should not be this much of a fight over common issues. I found out the state of Michigan (where I am originally from) doesn't test for this like it does with CF, MD, Down's automatically when maternal blood panels are done. Oh and if you ask to be test it's $1500 to test for FX unless you can convince your insurance to cover it. WHAT?! That is disgraceful, it is just as common as the other issues yet it is not being tested for. Please believe it isn't just good ol' MI either, this happens in MOST states in this country. Yep, most states DO NOT test for Fragile X unless the parent specifically asks for it. I call a mega-hardcore BULLSHIT on that U.S.A. That is totally idiotic. No other way to put it. Again, the most common genetic cause of disability is not being tested for in a pregnant woman's blood panels. Riddle me this, WHY?! There is no answer. Literally none. I've been asking.

My own OB (whom I adore) who has been an OB/GYN for 20+ years had no clue about this because it is not talked about. She has taken it upon herself to get cozy with my genetic counselor and learn as much as she can and has been SO supportive (she even called us whilst she was on her vacation to check on us) but she still had no idea about this. WHAT?! Medical Industry: I am calling you out son. You and I are going head to head here buddy. You suck. You are not doing your collective job to care for and inform and treat patients. Most people don't find out they're even a carrier until their child/children is/are diagnosed with a full mutation and have Fragile X Syndrome. That is not okay. For once, I want the people in charge (Surgeon General, FDA, all of the agencies/groups/people in charge) to be folks like me who have had some sort of medical issue they have had to fight over and advocate about to make the decisions. I'm sorry unless you've been in hospitals, working with doctors, calling insurance companies, fighting with billing, etc. you don't know what it really means to deal with the industry that is medicine. It is an industry. It is a straight up business which unfortunately does not have the patients interests at heart. So many lovely doctors and nurses and professionals do have our interests at heart but the industry in general does not. I'm frustrated and angry about it.

It is a lot. I know the hormones don't help, I know that there is a little bit of time, I know most everyone who is talking to me supports (and usually loves) me but I also feel torn, sad, angry, happy, excited, and frightened. Anyone who tells me not to has a death wish. I'm crazy hormonal enough that I could snap one day in these next months, it could happen. Don't get me wrong I am still enjoying what I can, laughing when I can, loving when I can and that is pretty often. I am, however, also in turmoil. These thoughts/feelings/fears/risks/issues are on the front burner and not the back and I can't move them back there. I just want to talk to people who really get it and for those who've not been here to think before they speak and to tread lightly. I found the FXS group that is on Facebook that is the National and International go to board, they have helped a lot. I just need someone in real life I think. I might reach out to the support group here in Los Angeles that fragilex.org lists. It's worth a shot. Right now I am very overwhelmed with feelings and thoughts and just want to chat with someone who is also here or been here.

Blerg. So that's what is going on here. Crazy train party of one. Well I guess two, poor baby is on the ride as well. We did find out what gender the baby is so I'm trying to set up a photo shoot, calling all Los Angeles photographers who won't kill my pocketbook, wanna shoot our crazy little family with some colored balloons outside? Yay or Nay? C'mon crazy is fun, right? Even I can't fool myself with that one. Oh well.

Hope all is well with you and your dear chickens! :)

Cloudy With a Chance of Cramping

Last week was tough, Saturday I was really angry, Sunday I was exhausted, same with yesterday. Today I had my amniocentesis. I was really nervous going in. Also in the waiting room. Then they brought me back and we did some preliminary ultrasound pictures and measurements. Then the doctor came in for my amnio, we did the local and then my squiggly wiggly child went everywhere he tried to stick the needle. After four times of trying to needle me and failing the doctor took a break so I could relax and so could our little one. After a few he came back in and gave me more local anesthesia and needled me again. This time it worked and we got the fluid. The needle sticks were painful and caused cramping but the removal of the fluid was like being vacuumed on the inside. Immediately after I was cramping and in pain. They told me I will cramp for 1-7 days and probably bruise. The fluid was a clear yellow though so that means baby didn't get needled. I am also supposed to stay off my feet for seven days, they did not forewarn me of this. So now we wait. We wait for 10-14 days to find out about the Fragile X and then up to a month for everything. Joe is supposed to blood work tomorrow. They did more blood work on me today too. Hopefully we find out as much as we can as soon as we can.

Just a lot of pain and cramping today. It'll be worth it for what we find out but boy am I feeling it. We just have to be strong and brave and hope that little one got my good X chromosome. Doctor said looking at the ultrasound that the baby looks great and "normal", so based on pictures and measurements the incubation seems to be going well thus far. We shall see though.

I just wish that Fragile X was talked about more and taught to us, we all learn about so many issues and if this is the number one inherited cause of mental and physical disability then it should be more well known. No one has really heard of this as far as I have discovered. Out of the dozens of folks I have personally talked to (including some in the medical field) and all those on Facebook I've found ONE person who has heard of Fragile X. ONE. Just ONE. 1 in 160 women are carriers like me, 1 in 800 men are carriers. These are NOT high numbers. This should be known to the public. Most states, I've found out, don't even test for this like California does. This is something I think should be MANDATORY. Again, number one cause. Why the hell is this so unknown?! I just can't, it makes me so angry.

 Keep us in your thoughts and hearts. Thanks dear chickens.