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These words are my diary screaming out loud

Tuesday, June 21, 2016

RIP Marisa.

My heart is hurting this morning. 

Back when I first found out I was pregnant and decided I should probably look into doing some research on being pregnant, my Rock Boat friend Stacy, who was also pregnant, told me about this website with a community forum where there were separate boards for women with similar due dates. She sent me to the one for the last week of September, telling me that the main September board wasn't really her thing - some snarky women who weren't always very supportive. I stayed on the weekly board for a while, but out of boredom one day went over to the main September board, and realized that I actually found the women she was talking about to be pretty funny, and brutally honest. I started lurking their chat thread, and eventually piped in. It took a little while for them to accept me, because they'd all been chatting for a good while already, but they did, and I enjoyed their company, and even became Facebook friends with several of them. I was among the oldest of the group, but whatever. It wasn't about that, it was about sharing experiences through our pregnancies and the births of our babies, and laughing a little at internet stupidity. It has been very comforting to be able to look to these women to reassure myself that my kid is normal, and there's nothing better than a Facebook feed full of cute babies.

Last Monday, we found out that the youngest of our group was in the ICU in a medical coma. She had some sort of a rare heart condition, and had basically suffered a heart attack at work. Her coworkers found her gasping for breath, and when the ambulance arrived they had to perform CPR. They weren't sure how long her brain went without oxygen, but it was long enough that by the time they got her to the hospital, she was showing very little brain activity, and they placed her in the coma. 

There was a moment of positivity mid-week when she moved her arm slightly and was showing some brain activity, but by the next day it was gone, and it was time for her family to start making decisions. I woke up this morning to hear that she was gone. She was 21 years old. 21. The same age as my baby sister. How does that even happen??

My first thought through all of this was my god, that baby will never really know his mother. And then I go down the rabbit hole of what ifs. That could have been me. What if B never got to know me? What if my husband was left without me to raise our child on his own? Marisa wasn't married, but she spoke regularly about her baby's father and he sounded like a very loving and supportive partner and father. Who had to make that final decision? Did he have any say? Did he agree with the decisions her family made? What happens to her boy? Did she have a will? I need to find my will and advanced directive and get them updated - they're over 10 years old right now, and obviously a lot has changed since then. See? Rabbit holes. 

But it all comes back to that beautiful child. What's next for her son? There's a tiny selfish part of me that is sad that I may never get to watch that baby grow up the way I will with my other internet friends who had babies near the same time. We've all kinda grown attached to each other's kids, I think, and all care for each other and our children's well being. But I know this is so much bigger than that. This baby now has no mama, and she was so proud to be his mama. 

I hope that there is some way that we can keep up with how her son is doing. I hope that he eventually is able to know that he has a bunch of internet aunties out there that care about him and want to see him grow up into a happy healthy boy and man. I hope he will know how much his mother loved him, and how proud she was of him. I'd like to believe that she'll be watching over him from heaven, that she'll be his guardian angel.

I still can't believe it.

Wednesday, June 15, 2016

Some words about Orlando

I have spent the last couple of days really trying to figure out how to put into words my feelings about Orlando. So long I have not been super successful. Especially in a work environment where my real life quite centrist viewpoints seem VERY tree-hugging hippie liberal. So now I'm going to try here. 

Several of my good friends from high school are gay, to include my best friend from high school. I knew from our senior year - I can't remember exactly when it was. Maybe middle of the year? He had gone to a different school for junior year when his family moved to another town, but had come back. We were going to a choir competition in that town, and several of his friends from that school were going to be there, and he felt that I (and a few others) needed to know because there was a story there. Not my story to tell, obviously, so I won't say anything beyond that.

I will tell you what I remember from that. (It was almost 20 years ago, so he may remember it differently, and I understand that.) It was the first time I had ever been in a situation where someone had come out to me. I had never really thought much about it before - this was 1997, people weren't super public, and there still a lot of stigma and fear around homosexuality in general. But I remember feeling special that he thought enough of me to share with me, to tell me his story and to trust me with it. We went to prom together that year, and I still love those pictures.

When I was a sophomore at the Naval Academy, I started dating a guy who was less than tolerant. I was a year and half into my time in the "military" (that's in quotes because as anyone who has been to a service academy will tell you, they're not really the military) and still pretty moldable when it came to how to think about things, and I let this guy really affect me. I said something to HSBFF about how if we got married, this guy wouldn't be comfortable with HSBFF's partner being there. I didn't know it at the time, but that comment ended up basically ruining our friendship. 

I broke up with that guy a couple months before the end of my junior year, and was trying to get ahold of HSBFF because we had talked about my Ring Dance, and if I was single he was going to go with me. He wasn't answering my calls, wasn't replying to my emails. On 9/11, I called his parents to let them know I was OK. They asked if I'd talked to him. They had no idea that I hadn't heard from him in months at that point. I was devastated. I still had no idea.

Several years went by before I found out what had actually happened. I apologized profusely. I told him that I was not at all like that. That I had never meant to hurt him. That I would do anything to make it OK. We were myspace friends for a while. I found out that he had since married the previously mentioned partner, in Canada where it was legal long before it was here. I was truly happy for him. When facebook became a thing, we were friends at first, and I learned that his career was taking off and he and his partner were fostering children and things seemed to be going well for him. I thought maybe we were on the way to repairing.

And then he went dark.

It looked like he had deleted his facebook. Which happens. But then I heard that he hadn't and realized that he had actually blocked me. I was pretty upset, and even posted about it here a few times. I had pretty much accepted the fact that he was never going to be a part of my life again, and he was never going to truly forgive me.

A few months ago, he unblocked me. We've had some conversations since then, and he actually only lives a few hours from me now. He and his husband adopted four children, siblings, out of the system, which is amazing - there is a special place in heaven for people who choose to do that. Their hearts are huge. I hope that at some point in the future I can finally meet his family, and have him meet mine.

Why do I tell you this long story? I don't really know, other than it just hits close to home with Orlando. I've been to gay clubs with HSBFF and other friends. And all I could think about when I heard about this was it could have been any of us. Gay bars aren't just for gay people. They're safe places, for gay people, for groups of girls who just want to go out and dance, for people who otherwise just don't feel like they fit in. For anyone, really. They symbolize acceptance and non-judgementalness in a world that is often anything but. And literally, it's less than 100 miles from where I live.

This guy did more than just ruin the lives of the 49 people he killed and the 53 people he put in the hospital and the numerous others who got out but witnessed the whole things. Their families now have to deal with the results, whether that's saying good bye to a loved one or paying medical bills or dealing with PTSD. He took innocence from the children seeing this on the news, he chipped away further at the comfort of the many who, between San Bernardino, Sandy Hook, Aurora, and the countless other mass shootings in recent history, have very little left. 

Something has to be done. I don't know what that something is, and trying to compartmentalize the numerous issues that have arisen so far from this incident won't help. But something has to be done. 

Please register to vote this year. Please do your research on more than just the Presidential candidates. If you want change, any change, in any direction, your state, local, and Congressional representatives will be able to do more for that than a President. 

Tuesday, June 07, 2016

Oh, Colin. You are no fun.

Not any of my friends Colin. I still love you. I'm talking about Tropical Storm Colin.

This is not my first Tropical Storm or Hurricane experience. I've been through several, in fact. But this is the first time I've been in Florida for one, and the first time I've been through one in my current job. 

Sunday I went to the grocery store for a couple things that we hadn't gotten, for various reasons, on our early morning Target trip. The place looked like we were about to get a blizzard or a huge hurricane, not just a tropical storm. In an area that is not prone to flooding. It was ridiculous. And people have no respect. Oh, the express line is shorter? You have a full cart? You are more important than EVERYONE else? Thanks for making it so I didn't get to my car before the rain, assholes. 

Yesterday work was at least kind enough to let us out early, since the area of town where I work is VERY prone to flooding. I was able to make it to my car before any monsoons started, and not by much - before I was even a mile away, it was coming down pretty well, and sideways. There was definitely a spot on the highway where everyone was going 25. And oh by the way, THAT'S NOT WHAT YOUR HAZARD LIGHTS ARE FOR. 

It was good to make it home before the real worst of it, though. And in all reality, in my neck of the woods, the real worst of it was lots of rain and some wind. The tiny tree at our less than a year old Wawa came down. That's the extent of any damage I saw in my neighborhood. 

It wouldn't have been that bad if I could have made the decision to stay home today - I actually thought about it. But Tuesdays are basically unmanageable for me these days. I have 3 regular meetings that all happen at the same time on Tuesday, and the one I have been directed to not miss is not the most important. Go figure. I decided I wasn't going to drive in the dark, because floods, and because it was thunderstorming pretty heavily this morning. I slept in a little extra, took a little extra baby snuggle time, and finally left about 2 hours late. What should have been about a 40 minute commute was an hour and a half, and I still got soaked on the way in. Nothing like starting the day with wet clothes. At least I had my boots, rain coat, and umbrella, but they only covered so much.

So here I am, trying to stay awake at the end of what has been a pretty exhausting last couple of days. But why has it been so exhausting? I sat in my last meeting trying to figure it out. All I can guess is the weather - just in general, weather like that makes everyone just want to sleep. And on top of that, driving 25 on the interstate because you can barely see beyond the small metal pod you are encapsulated in, when even the highest setting of the wipers is NOT keeping your windshield clear, and some folks are WAY more important than me and MUST KEEP GOING FAST... that gets very tiring very fast. Add that to a baby that has decided sleeping by himself in his own bed is just a bad idea and, well, you get the drift.

So yeah, Colin? Glad to see you go. Bless your heart.

Wednesday, June 01, 2016

The more things change...

I haven't written here in almost two years. 

I've thought about it. I'll be sitting at work, or driving, or snuggling the baby (I'll get to that), and I'll think of something I need to get down. Then I don't. 

And it's not just the blog. It's my other writing too. I haven't don't any of it. There's no real reason. I miss it. I know it's an outlet for me. I know I benefit when I put my thoughts, my feelings, my soul into words. Maybe that's part of why I've been having a little bit of a hard time lately. 

About 3 months after we moved to Florida, we found out I was pregnant. To say we were excited was an understatement. We were absolutely thrilled. But part of me was a little frightened too. I wasn't sure how my body and my sleep disorder were going to react to pregnancy. I had to stop my meds immediately and I was nervous. I'd heard of women basically sleeping through their entire pregnancies. Luckily that was not me, and the sleep Doctor here at the VA was fantastic and worked with me on some ways to manage my sleepiness. 

The only thing he was mildly concerned about was that some women experience cataplexy for the first time during labor and delivery, so he had me warn my OB about that. Luckily(?) that ended up not being an issue, because this baby really enjoyed his head in my ribs, and showed no interest or intent on flipping. 

On September 25th, we welcomed B into the world. What an amazing thing. Our lives have changed for the absolute better, and we are loving every minute of parenthood. He will probably be the focus of plenty of posts in the future, though, so I'm gonna move along at this point, except for a picture. There are a zillion more on my Instagram (franchise02).

Back to the original point here. This kid was an amazing sleeper at first, but we've definitely hit some regression lately, and it's affecting me. Combine that with hormonal changes, and a healthy dose of mommy guilt, and basically I'm the hot mess express. I'm over emotional. I'm under emotional. I can't control my emotions. I'm tired. I can't sleep. I just want to nap. I'm lonely, but I'm never alone. I love my child and wNt to spend every moment with him, but I need a break.

My internet stranger Mommy friends say it's totally normal. Which only makes me feel a tiny bit better. But this. This is making me feel better. Words. Typed out, that I can go back and read. I don't necessarily need (or expect that) anyone else will read them, and that's ok because that's not the point.

I'm breathing easier already. I need to find a way to do this more.

Tuesday, November 11, 2014

Guest Veteran's Day post for Hypersomnolence Hub

I was asked to write a post for Veteran's Day for the Hypersomnolence Hub blog. Here's what I came up with. You can also see it at http://www.hypersomnia.info/this-veterans-day-support-efforts-to-improve-awareness-of-sleep-disorders/

I am a veteran, and I have Idiopathic Hypersomnia. I've probably had it since I was born - when I was diagnosed, I called and explained it to my mother. She said it made a lot of sense. But getting to that diagnosis took a while. To be honest, realizing that my levels of tiredness, the difficulty I had staying awake on a regular basis, the amount that I slept, realizing that none of that was normal took the longest. But once I did finally get myself to a doctor, it took two more years and separation from the Navy before I finally had some answers.

I entered the US Naval Academy at 17, and spent the next 10 years in the Navy. Just as there had been for most of my life, there was always a reason for my tiredness - physical and mental stress, the lack of a regular sleep schedule, sometimes just the plain lack of sleep. It could always be explained away. I never thought that there could actually be something wrong with me. I was just not someone who could do well on a little bit of sleep, especially not for multiple nights in a row. I needed that rest. 

But then, in 2006, I went to a "shore duty" job - a job on land where I was working normal hours, 8-4 or so every day. I was going to bed by 9 at night, and having trouble waking up to my alarm at 6. On the weekends, I was sleeping in, and still waking up exhausted. I was falling asleep at my desk. For the first time, there was no reason for it.

So I finally decided asked the Doctor about it. Military medicine has a reputation, usually for not being too great. It's true sometimes, but I really liked the doctor I was seeing at that point, and I figured it couldn't hurt. So I made an appointment, and asked her about it. And she pretty much blew me off - "You're in the military, everyone's tired in the military." When I told her that it just didn't seem right, she said she'd test my thyroid. Basically, she was blowing me off.

Of course, my thyroid came back just fine. But I let it go. I felt pretty helpless. I knew that something wasn't right, but what was I supposed to do about it? I knew nothing about any sleep disorders other than sleep apnea, and even that knowledge was very limited. I had no idea how to advocate for myself, especially in the military medical system. And honestly, I wasn't sure I wanted to. There's a thing in the military that if you're going to the doctor too much, you're trying to get out of something. You're a dirtbag, you're lazy. 

Lazy. The worst four letter word for someone in the military. And, as it turns out, the worst four letter word for someone with IH. But I'm getting ahead of myself.

I got out of the Navy in 2008. When my insurance from my first post-Navy job kicked in, the first thing I did was go to a doctor and ask about a sleep doctor referral. In January of 2009, I finally got to one, and for the first time, I was talking to a doctor who didn't blow me off. Who didn't think I was trying to get out of something. Who didn't think I was just lazy. He immediately recommended a full sleep study - the overnight test that most people are familiar with, and then the daytime test the next day. Due to a cancellation, he was able to get me in within a couple of days. A few weeks later, I had my diagnosis: Idiopathic Hypersomnia.

I had no idea what Idiopathic Hypersomnia was, and it seemed like the internet didn't really either - there was very little information out there at that point. The doctor explained it as basically Narcolepsy without some of the clinical indicators required to actually diagnose Narcolepsy, and I was OK with that. It was an answer, a validation that something was actually wrong. That I WASN'T a dirtbag, or even worse, just lazy.

I started to look back on my time in the Navy, and so many things started to make sense. I so badly wanted (and let's be honest, I still want) to go back and find some of the people I had worked with and tell them - you guys, see? There was a reason! I want to go back to that Operations Officer who told me I could sleep when I'm dead, to which I responded by asking him if he knew how stupid that sounded, and say see? This is why! And I want to go back and find that Pakistani Naval Officer who realized one night while observing my watch that even in the craziest of conditions, I was having trouble staying awake, and instead of just watching for a few minutes, stood my whole watch with me and helped make sure that nobody else in that pilothouse noticed. I want to tell him that the Pakistani warfare device that he gave me is still one of my most prized possessions, and that I will never truly be able to express how thankful I am to him for that night. It could have ended very poorly otherwise.

From what I can gather, knowledge of sleep disorders in military medicine has improved a little bit. But, as is the case in civilian medicine too, it often just depends on where you are and who you see. The VA has greatly improved - when I first went to the VA to get treated through that system, they tried to send me to a psychiatrist, even though their own system had determined that my IH had nothing to do with PTSD. But when the Ritalin stopped working and I realized I wasn't going to be able to afford any other meds on my then-company's horrible insurance plan, I revisited the VA. In DC, they now have a sleep clinic with several doctors who know and understand multiple sleep disorders, not just PTSD-related Sleep Apnea or insomnia. 

Sleep is a funny thing. It can be your best friend and your worst enemy, sometimes even at the same time. With IH, that sometimes becomes most of the time. That was definitely the case for me when I was in the Navy and still undiagnosed. Now, with medication, it's better. 

So on this Veteran's Day, I ask that you not only think of all of those who have served, past, present, and future, but also I ask that you support efforts to improve the understanding and awareness of sleep disorders and sleep medicine. While I really would love to see the military do better with this, I think that if it's better understood as a whole, it will make its way into the military as well. 

Thursday, October 09, 2014

Big changes...

Yep, I've been silent again. Not on purpose, just didn't have a ton to write about for a little while, and then suddenly had a ton to write about but not time to write it.

Today is my last day in the Pentagon, my last day at the job that I've worked since February 2012, our last full day in Virginia. I've really enjoyed this job, I've learned a TON and gotten to experience some pretty cool things. I've made some good friends, and I'll be sad to leave some of the people. Working in the Pentagon has been really cool. I know some people hate it, think its too close to the top, whatever. But I enjoyed it.

However, it was time to move on. We've been looking at trying to move to Florida for a while, for various reasons It was something we talked about from the time we made the move back up here - cost of living is so high, and it's very crowded, among other things. For various reasons it was delayed several times.  But it finally worked out, and it worked out fast!! Less than a month ago, we found out that the contract had been awarded for a position that I had been offered contingent on that. It took a few days to get everything straightened out, but about a week later I had my official offer letter and a start date of October 13th.

So for the past 2 1/2 weeks, we've been packing the apartment, finding a place to live, arranging a move, trying to tie up loose ends and see everyone up here before we go, and not fully succeeding at any of them, I'm sure. But it's not like we'll never be back - I have lots of family and friends in DC, so visits are inevitable.

Today, I finish up at work and do all the admin out-processing goodness while husband and the movers load up our truck. Once I'm out of here, it's back to clean the apartment and get the cars mostly loaded and try to calm what I'm sure will be 2 very nervous kitties. His parents arrive around 4, we'll get them checked into their hotel, then an earlyish dinner with my parents and hopefully a friend or two. In the morning we wake up, get the kitties and the last few things in the car, and hit the road, hopefully by 8 or 9.

We have quite a couple of days ahead of us, and I know that someday soon I'll get to sleep all day :) It's exhausting, but the end result will be worth it. Wish us luck!!

Thursday, September 11, 2014

The annual 9/11 post

I remember it like it was yesterday. I mean, how do you not remember something that was so close, so life changing, not to mention not knowing where my dad was for a few minutes, and hearing all the rumored additional target lists popping up, many of which seemed to include the Naval Academy.

But I've posted about the day before. That's not what I want to say today. I woke up this morning and did my normal routine, which includes looking at social media as I'm waking up. As to be expected, lots of tribute and rememberance posts today. But then I saw someone had posted a picture of the towers burning before they fell, of course with the caption "never forget."

I understand that everyone remembers differently, and everyone pays tribute differently. But those pictures are burned in my memory forever. I avoid the news and most TV 9/11 week because they're still very hard for me to see. I haven't been able to bring myself to go to any of the memorials yet, but its still just too soon for me. I should know better than to think that Facebook is a safe place, obviously its not. But it just really bothered me to see that this morning. I know I shouldn't be bothered, or insulted at the perceived but more than likely absolutely not intentional implication that I need to see those pictures to remember. Especially posted by someone who was nowhere close to the events, physically or otherwise, and who, while an old friend, I pretty much disagree with 100% when it comes to politics. I know that everyone is different. So why does it bother me?

The answer doesn't really matter in the big picture, and I would never dream of saying anything because its just not worth it. But I would ask that anyone reading this think about it before you post anything graphic from this day 13 years ago. How you remember and how you pay tribute to those lost this day and since may be a trigger for someone else. Don't be insulted if they react to it. Today is a day that should be filled with love, compassion, kindness, and peace. In the words of The Alternate Routes, "we are how we treat each other, nothing more." And never is that more important than on days like today.