Homesteading and the City

Happiness

2012-02-23T20:41:00.000-08:00

I've written here before about the idea of should and should not being dangerous. I have a lot of ideas about this as it applies to different areas of life, such as education, career, social interactions, parenting, etc. Through time, as I stop focusing on what I should or shouldn't do, I am coming to change many of my own views and approaches in many of these areas as well. And, as I come to find things that work better and have better results in my own life, I am often tempted to share them with others. After all, isn't that what we all want to do? Find something cool and share it with others. But, when I really pay attention to how most people communicate with each other, I find that it has very little to do with sharing and a whole lot to do with validation, justification, and a pile of passive-aggressive bullshit.

For instance, one of the most heated topics online is breastfeeding. Everyone has an opinion about what everyone should and shouldn't do. Some people have science on their side, some people have feminism on their side, and so on. Pretty much everyone can justify their point of view in some way, and fight to the death about it (and, preferably, while calling the other person an asshole). And, the fact of the matter is that there is exactly one person in the world who can tell you what you should do about feeding your baby. And, that's you. No one else knows you, your baby, and your circumstances the way that you do. And, frankly, no one cares. When someone starts to talk to you about how YOU should feed your child, it is categorically about them and their insecurities, fears, etc. It doesn't matter how right or wrong someone is. They aren't talking to help you, they are talking to achieve something for themselves.

From what I can tell, the majority of interactions that people have with each other consist of two people expressing their fears and insecurities by talking at each other in a manner designed to make themselves feel better than the other person in some way. I've started talking a whole lot less than I used to, and it's amazing how much you really learn by listening to people. I spent my entire life trying to understand people and, now, I have come to think that you can never really understand anyone, at their core, but you sure as hell can tell who you want in your life and who you do not simply by listening to them.

Back in the day, I did the same thing that every woman in the world probably does. I spent lots of time trying to figure out why men behaved the way that they did. Were they afraid of commitment? Were they afraid of their feelings? Were they just not into me? And on and on and on. And, as I've come to believe about most things, none of that mattered. The reality was that the relationship simply didn't make me happy. While I didn't have the ability to understand why someone else was behaving in a certain way, I absolutely had the choice of who to invest my time and energy in, and the ability to end a relationship when it became clear that it wasn't working.

For whatever reason, I've always hesitated to end relationships. I wanted to stick with it. Or something. Frankly, I am sure that there are all sorts of reasons why that is the case. But, the reality is that I have let all sorts of people into my life in all sorts of ways who were downright toxic. While my romantic relationships are the obvious ones, it's amazing how many people seem to want to be in my life solely to judge and to criticize. I used to think I was somehow unique in that regard, but the more time that I spend around others, the more that I realize that I'm just the extreme example of a pervasive problem. Gossip used to be a bad thing, and now it seems like the majority of social interactions involve trash talking someone in some way, and it's not just accepted, it's encouraged. Whether it's someone who isn't there, or some sort of social group (Christians, gays, liberals, conservatives, etc), or even a celebrity, it's amazing how negative, snarky, and just plain gross so many people are about whoever it is who it is considered "okay" to judge in that particular circle. Every group seems to justify it by how "wrong" the other group is, and how different from them that they are.

Well, I'm sick of it. I don't care what it is that you think is right, the reality is that everyone has some sort of value and something that they believe in. No one is ever going to agree on everything, and if you wrap yourself in a cloak of being "right" in order to justify your own intolerance and judgementalness, you're doing exactly the same thing that you're criticizing in others. Whether you think Christians are assholes or gays are gross, you're still being a judgemental jackass based solely on your belief that your values are somehow better or more right than someone else's. And, well, from what I can tell, the more that someone feels the need to yell and scream about their values, the more insecure about themselves they actually are and the more that they are simply using those values as a means of validating themselves.

God knows, we all do it. I'm certainly guilty of it in many ways. I think it's probably a natural human instinct to compare ourselves to others. But, I don't think it's healthy, and I think it's a great way to make yourself miserable. If you base your ideas about yourself on external forces, there will always be someone smarter, thinner, prettier, funnier, more pious, etc than you. You'll never have the best house, the most money, the nicest car, etc. You will never, ever be the best on a planet of a bajillion people. So, no matter how good you are, you'll always be left feeling like a failure. And, probably even being pissed off at those with more than you. It sounds like a pretty exhausting way to live to me.

Personally, I don't enjoy trash talking anyone. I have certain values and ideals that I hold dear, but I don't think that people with different values and ideals are idiots or less than me. I don't think that I'm inherantly better or worse than anyone. And, well, I don't think that anyone else being more or less of a trainwreck than me changes who I am, my self worth, my value, or anything else about me. Life isn't a competition. There is no prize at the end.

So, I hesitate to share a lot of my ideas and discoveries these days. Because, at the end of the day, it may be that they simply apply to my own life and to my own kids. Perhaps I'm making my way to a better way of living, but perhaps not. God knows that I question myself and change my approach and think long and hard about what I do and why I do it all the time. But, I do know that the changes that I am making in my life and in the lives of my kids have had a variety of very positive results. For the first time in a very long time, I am finding my way to happiness.

Random Snippets

2012-02-23T08:45:00.001-08:00

It's only 8'ish am and we have rescued a child from under a collapsed bed, been to Starbucks in formalwear, swung on swings, and hauled babies around. Just another day around here!

Now to finish the godforsaken unpacking before picking up Janes. He is having surgery today and I agreed to deal with his post-surgery nastiness in exchange for deep-fried bacon at John Howie. I mean, c'mon. Deep-fried bacon!

Read my Second Book for Free!

2012-02-22T21:48:00.001-08:00

Since the first book's free promo is ending tomorrow, I thought it was a good time to make the second book available for free. Starting at midnight tonight, you'll be able to snag it for free (for five days). Enjoy!

http://www.amazon.com/Book-Two-Reporter-Homesteading-ebook/dp/B0077ZR16M

P.S. I have print copies of both books, and they will be available through Amazon within about a week. Craziness.

Settling In

2012-02-22T21:29:00.000-08:00

I have a variety of topics in my head tonight, but I lack the energy to write about any of them, so I'm going with the tried and true method of phoning it in with photos. We've been hard at work unpacking the new place, and getting everything assembled/set up, and we're nearing completion... or, at least as complete as a house ever is in my world, since I constantly get a new idea and want to do something else to it!

I had a bunch of the rooms painted before we moved in, but I HATE one of the colors and am having that room repainted (oops), and I wanted to take some time to decide on colors for a few other rooms that are easier to paint with our stuff in them (kitchen, bathroom, playroom). The bedrooms were all finished before we moved in, which is nice because we don't have to move all of our crap when they come back. Meanwhile, I have paint chips taped to the walls all over the place, and I'm glad that I did that because I've already decided that I don't want a blue kitchen at all, and I am ready to go back to Lowe's for a variety of green paint chips, instead! Speaking of Lowe's, I truly believe that it is the seventh level of hell. I've been there at least once a day for the past week or so, and I'd rather stick pencils in my eyes than go back there anytime soon.

It's mid-winter break this week, so all of the kids and their friends are off school. Emilia's BFF has been over a lot, and she is sleeping over there tonight. They decided to build a swing and a treehouse this afternoon, which kept almost all of the kids pretty entertained for a couple of hours. I'm not sure that either one will ever actually function as they were intended, but they had a lot of fun with a hammer and nails! They also walked down to the lake and found a ginormous (no, really, I've never seen anything like this!) pine cone and a ton of shells. Milo is not a fan of the water, but he does like walking by it. The babies are also loving their walks in this neighborhood since we're right along the lake. Lots of cool stuff to see!

I have a few ideas for our homeschooling approach that I am trying out this week in other avenues. So far, I seem to be narrowing down an approach that will help provide the kids with a little more organization, while actually increasing their autonomy, which is my overall goal. We'll see how it goes for the rest of the week!

Our house is still very much a work-in-progress, but here are a few pictures of our progress! Not bad considering that we moved in on Sunday.

Easter mantle... what can I say, the Target dollar section stuff was way too cute!

Lydia and Sophia's room (I still need to hang their curtains in there. The roman shades were custom-fit to their old windows so I'm faking it by hanging panels on the sides to cover the gaps...)

My room, aka the weird bedroom that you have to walk through to get to A&C's room. A&C love this turn of events. I am just so happy to have a bathroom in my bedroom again that I'd sleep pretty much anywhere! I got this duvet cover on clearance from West Elm for $29. I could not love it more.

Emilia's room (and my unpacking helper, Miss Lydia!)

A&C's room, complete with a rolling Charlotte helper! I need to hang their curtain rod and bookshelf and button monograms in here, still, but at least they aren't sleeping on mattresses on the floor anymore.

You can see downtown Bellevue and I-90 out their window and Alice informed me that the road outside had traffic tonight at bedtime. You're telling me, Alice.

This is the playroom... Charlotte said that it should be orange and green with rainbows, so that is what it's going to be. Plus, butterflies and hearts. Why not?

Lydia is a master texter. Seriously. She managed to text Emilia's BFF like four times, and even got on Facebook. Totally my child.

Playing peekaboo (in the soon-to-be-grey bathroom)!

I had to snap this while Emilia was putting pigtails in Lydia's hair... same hair color much?

Normal

2012-02-21T19:38:00.001-08:00

It's been a busy few days around here. We moved into our new house on Sunday so, of course, we've been doing all of the normal stuff. However, it's also been (yet another) exercise in learning to delegate, pace myself, and help the kids do the same.

I realized recently that part of my confusion around my health has always been the difference between being "sick" and feeling how I usually do. I don't feel "sick" in general, or at least not my idea of sick. It's not like I have a perma-cold or something. It's very different from that and goes up and down so much in a single day that you never really know what to expect, and it's not like feeling awful in the morning means you'll feel awful later. I always describe it as feeling like my body just doesn't work. I CAN do everything, but nothing is easy and something as simple as keeping my eyes open requires a conscious act of will these days.

Lately, I've been ruling out all sorts of things. Every time I do that, I get frustrated because the doctors just sort of leave it at that. In their defense, we are waiting on testing for genetic issues, but it's like no one can find their ass with both hands if it falls outside of their routine practice. Today, a cardiologist told me that my heart issues aren't primary and sent me on my way. No shit they aren't primary! No one thinks they are. According to him, I just have PVCs and arrhythmia and tachycardia and bradycardia and orthostatic hypotension. But I had a normal echo so I don't need any further testing until and unless they find something else. Uhhhhhh. The guy didn't even know what CPEO is. He had to ask me. Fuck me running. Seriously.

I guess the good news is that my brain is lovely and my hearing is normal. Apparently, my issues are processing ones, not memory or hearing itself. So, I am not actually going deaf or senile, I just have a variety of processing issues, and now I have been referred to yet another type of doctor to sort that out (neuropsych).

Meanwhile, the neuro geneticist who every single doctor keeps referring me to doesn't want to see me until Children's does their work up on Lydia. I talked to my neuro today and he is having me go see a neuro muscular specialist at UW. He says that getting him to further pinpoint the cause of my symptoms will get the neuro geneticist more interested in taking my case and/or might be able to bypass him entirely. At this point, I'm about ready to hack out a piece of my own muscle and call it good. It seems pretty clear to me that a muscle biopsy would end much of this once and for all. Ragged red fibers or no ragged red fibers? That is the question.

For awhile, all of the doctors said I was just tired/stressed. Then, it was MG. Then, it was MG that didn't really fit quite right. And, now, I get "normal, but you're all jacked up, but interesting" and a vague good luck on my way out. No one seems to know WTF mitochondrial myopathy even is, much less how it manifests in their own discipline.

While, on the one hand, this is all very complicated genetic crap, it's also pretty simple. My muscles all wear out, people. Stop for two goddamn seconds and THINK about what would happen in someone whose muscles are super weak/working really hard that would result in my symptoms. A fucking five minute Google search led me to a description of cardiomyopathy that was consistent with Lydia's abnormal EKG in the hospital. COME ON. Stop telling me all of the "logical" explanations (cardio said that about 10 times today) and start thinking. Logical is only useful if it's actually accurate.

Meanwhile, I'm wearing a 24-hour BP cuff, which is driving me insane. It goes off every 15 minutes. I think that vascular problems are probably a major issue for me so that's probably the next step. Then again, who knows.

In more entertaining news, two doctors have now told me to stop eating so healthy and start eating more salt. Eat more salt and exercise less is not the advice you expect to hear.

At this point, I have no real idea what to "do." By the time that keeping your eyes open is difficult and every step you take hurts and every movement results in joints creaking and popping, not to mention all of the 2677444 unpleasant other symptoms, how do you know when to rest and when to keep going? If you're always struggling and always in pain, how do you know how much is too much? How do you even know what to treat? My symptoms list is a mile long. Which ones matter enough? I have no idea.

Looking back, all of these signs were always there, but they became my normal. Through time, my normal adjusts to whatever my circumstances are. But, I am finding that it is important to remember that they aren't normal. Even if they can't be easily explained or treated or cured, this is not normal.

Tomorrow, they are taking blood for the genetic testing. Eventually, we will have some goddamn answers.

In the meantime, the Target dollar section and I bonded and Easter has blown up on our mantle. And, we are almost unpacked!

Better than Me

2012-02-18T12:47:00.001-08:00

The other day during my EEG, the tech lady and I got to talking and she mentioned that there is some new research or study that shows that babies as young as 7-8 months pretty much understand everything that we say even though they are generally not talking yet. My response to that was, pretty much, no shit. I mean, does anyone who has ever raised a baby NOT know that?

It's amazing to me that anyone would ever equate the ability to speak with the ability to understand. They are two completely different skills. As most of us know by now, there is a huge range of normal in terms of speech. Alice started speaking very early, for instance, and Charlotte only said three words (rarely) until 22 months. Then, she exploded verbally, and has never shut up since. You'd never be able to tell now, at age 4, who spoke first by their vocabularies. But, you could guess by their relationships to language.

Alice very much likes to be the "good girl." She loves following and enforcing rules. She is very academically advanced and articulate. She can go pretty much anywhere and be perfectly behaved. She likes physical play, but is off-balance a lot and tires out. She has trouble running and jumping, but gets a lot of praise for academic and verbal accomplishments. The more that I have taken away rules and the "good girl" option, the more that she has blossomed and come into her own. She is learning to laugh at herself now, and to see others in a more positive light.

Charlotte has always been very sensitive. She is the one who sees someone hurting and tries to help them. She is exuberant and boisterous and laughs and sings. She expresses herself physically and struggles to use words even now when she is upset. She has always been very ahead with physical milestones like throwing a ball, but she is able to do everything that Alice can do academically, too. However, she doesn't enjoy it as much, so she does far less of it.

Looking at them now, and working with both of them to learn to express feelings with words, it's obvious to me how differently their natural relationships are to language. Alice has used it to her advantage from a very young age, whereas Charlotte has struggled against it. But, in both cases, they were fully capable of understanding and even employing language. They just did so in two different ways. Furthermore, despite the fact that they developed their language skills differently, it seems that both approaches were motivated by a desire to communicate and a fear of not being understood. So, as a parent, relating to both of them is pretty similar. Address that desire, and that fear, and the related issues just sort of go away.

Meanwhile, Lydia began speaking at a very young age. She was putting together two-word phrases around 8 months old. She has a massive vocabulary. Sophia, on the other hand, is a very strong communicator but does so primarily through a mixture of pointing, grunting, yelling, and speaking. She is quite advanced from an objective milestone standpoint, but is nowhere near as verbal as Lydia. Somehow, Alice and Charlotte talk a lot about how sweet and good Lydia is, even though she actually yells at anyone who comes near her when she is holding something! Sophia, on the other hand, loves to kiss and share, but yells more, and the girls say they don't like her and she is "bad" because of it.

In many ways, I think their attitudes reflect society's. It's "good" to be quiet and articulate. It's "bad" to be loud and physical. What a crock of shit. When I watch my babies interact, I see two smart, sweet, strong, loving, communicative, inquisitive, joyful little people. Why does anyone expect anything less from them just because they are babies? Being a baby doesn't make you stupid or less of a person. It just means that you're starting from scratch. No one ever actually stops learning or developing, so why do people act like children can't possibly understand anything, or be trusted with anything?

My older kids know all of my passwords, and all of my PINs, and could use any of them at any time. They have free reign to eat anything in the house whenever they want to. They can go to bed whenever they want. They can even swear now (I don't allow them to swear AT people, but they can swear as much as they'd like otherwise). They don't go to school or church unless they ask to. Thus far, they have done nothing but surprise me in positive ways. They are far better than me at nearly everything already. Perhaps, at its core, that is what everyone is so afraid of.

Read my Book for Free!

2012-02-17T15:00:00.001-08:00

Want to read my books but don't want to commit to the whopping 99 cent to $2.99 price tags? Well, starting tonight at midnight, you can download Book 1 via Amazon for free! This promotion lasts for five days, so grab it while you can.

If you have an iPhone, there is a free Kindle app for it, too.

I've added links to each book on the main page of my blog for easy access. Enjoy!

(Book 3 is coming soon and, yowza, 2003 was quite a year. We are getting to the good stuff! Print versions of each book will be available soon, too.)

Acknowledging Reality

2012-02-17T12:27:00.001-08:00

I used to have all sorts of ideas about what I should and shouldn't do. Through time, I have realized that I had most of them because someone told me something about myself.

As a child, I was told constantly that I was lazy, not working up to my potential, a liar, misbehaving, etc. Sometimes, what was said about me was probably true in that moment. However, the problem was that the person who said things about me was making generalizations about who I was, what I felt, and why I was doing something based on their own feelings, perceptions, and motivations rather than listening to me and really, truly hearing me. Every kid lies once in awhile but it doesn't make them a liar who can never be believed again, for instance. However, telling a child things about themselves, particularly when they don't reflect reality, does have very real consequences for that child. You grow up confused because people you're supposed to trust and who are supposed to keep you safe are the people who hurt you. You learn to stop believing yourself because it's safer to believe them. But, deep down, you know it's not true.

Robert talks more than anyone I know. I would ask him not to tell me something, and he would tell me that he just wanted to finish the story. He was known at work for ratholing meetings and our managers often would cut him off. For awhile, I loved talking to him because we had so many interesting conversations about history, philosophy, science, religion, etc. But, one thing we could never talk about was how I felt. When I tried to talk to him about my feelings, he would dominate the conversation, tell me how I felt, and what it said about me, and generally that it was wrong. He would meander through every abstract topic in the world, and my feelings themselves never did get discussed. And those weren't even the touchy or difficult feelings! If my feelings were in any way tied in to his own behavior, he would immediately deny it, accuse me of doing it too, and then accuse me of doing something else that was worse. If that didn't work, he would try to abstract the conversation again, until it was about philosophy instead of hurt feelings. Even if he later came to me and apologized and admitted what he had done to hurt or upset me, he never changed the behavior itself.

Once, I tried to talk to him about my health. He was constantly telling me when to rest, how to take my meds, etc. At the time, I had no idea what was really going on, and just wanted to talk to him about ways to maybe make things less hard for me. That conversation almost immediately became about him accusing me of cheating on him and lying to him. It went on periodically from lunch until bedtime. As the hours went on, I ended up curled up on the couch in a ball shaking while he continued to insist that I wasn't saying everything I thought, and was hiding things. It was akin to torture, really. But, that was life with Robert. Push, pull, up, down, until you have no idea who you are or what is real anymore. Until you step away, and get away, and it all slowly unravels.

As I go through this divorce, people often tell me what Robert is doing. I know that Robert is lying about almost everything. I think it's a tactic, really. If you lie about everything, it seems impossible for people outside of the cycle to believe. It's easy to make it look like he and I just can't agree, or that I am lying, too. After all, who lies about EVERYTHING? Well, Robert does. And he relies on implications and inference for the rest.

I could go around pointing out every lie but that would be exhausting. I want to be free from Robert, not beat him, anyway. I find the best approach from a sanity perspective is merely to focus on my own life and do exactly what I think that I should be doing. I don't put my energies in Robert at all; not even from the standpoint of defending myself. I put my energies toward what matters and what is real and true, and act accordingly.

We will have a parenting evaluation soon and I am very much looking forward to it, as are the older kids. This is our opportunity to tell our stories and be heard in the legal process, and to provide all of the witnesses who can corroborate our experiences. I don't know whether we will "win" in the legal sense, but in many ways it won't matter. I am already looking into a good play therapist for Lydia and Sophia, and when they are old enough, they will be able to participate in family therapy sessions with the rest of us. No matter what visitation schedule the court decides upon, they will be listened, heard, and supported by myself, their siblings, and trained professionals. Their reality will be acknowledged, and I think that will make all of the difference in the world.

Jared asked me awhile ago if I felt betrayed after Robert lied about me in a particularly unpleasant way. I told him that, at first, I felt very betrayed. Over and over again, in fact. But, eventually, I didn't feel betrayed anymore because I had come to expect that from Robert. It didn't hurt me in the same way anymore. Once you know what to expect, it's not betrayal anymore, it's just unpleasant. If only I'd known that years ago. Luckily, my kids will.

You don't know me! You don't know my life!

2012-02-15T22:03:00.000-08:00

Generally, when I start writing a post here, I actually have no idea what I'm going to say. And, I don't edit my posts much, either. I often don't even re-read them. It keeps things... interesting. Or something! (Especially now that I write most of my posts on my iPhone, which likes to helpfully autocorrect for me.)

At any rate, tonight I know even less than usual what I am going to write. I want to write about some of the new medical stuff, but there is just so much there these days. I guess that I'm still processing it all, and starting to come to terms with it. I'm not sure how I actually feel about all of this stuff yet. I've been struggling to come to terms with the idea of myself as someone with health problems that might actually require real lifestyle modifications, and now I am also considering the idea that my children may be facing the same reality. Talk about a lot to take in.

I'm currently dealing with many, many doctors spread across myself and my kids. Luckily, they are all sharing records and reading all of the charts and coordinating. I have no idea how people functioned before electronic medical records. Seriously. Even I can now access my records online! Thank the good god.

At any rate, as with everything in life, some experiences and some doctors are better than others. I called the kids' pedi the other day to discuss some concerns that I had about Alice. She told me a lot how normal all of it was, and that without a mito diagnosis, she wasn't going to "shoot around in the dark" by running a bunch of tests. I'd asked for a GI referral for continuous stomach issues that have been present for years, and an EKG since she is having bouts of irregular and fast heartbeat. I wouldn't consider either one of those to be a wild and crazy request. After her pedi told me for about the 50th time how normal everything was, in my four year old who spends most of her time resting now and can't make it through a day at preschool, I cut her off and said: "I was told my entire life that what I was experiencing was normal. Or there was nothing wrong with me. Or it was all in my head. And that would've been great except that it wasn't true. This is not normal." At the time, she seemed unimpressed by my sad tale, but the next morning she called me back and offered to meet with me for an hour before Lydia and Sophia's well child appointment that day to discuss my concerns about the other five kids. And, while we still don't see exactly eye-to-eye on how aggressive to be in the testing right now, we had a great conversation yesterday and came to an agreement about testing next steps and referrals for all of the kids. I don't always need to get what I want, but I am glad to at least feel like she is taking this more seriously now.

That said, James was with me on this one. I mean, c'mon. Even without mito, he has a completely irregular heartbeat and used to have a murmur, and his dad dropped dead at like 50 from a heart attack while taking a nap! Between that and my family history, you'd think that we could get a freaking EKG on these kids. It takes like 5 minutes, people. This is hardly going to bankrupt Premera, or ruin my kids' lives. Hrmph.

Anyway, dysautonomia seems to be the name of the game lately. In fact, after some testing at home, I was able to present my doctors with something new, which is orthostatic hypotension. When I stand up, my BP plummets and my heart rate skyrockets. When I sit down, it does the opposite. I seriously laughed when I thought back to my pregnancy with Jared, when my OB made me spend months in bed on my left side to lower my BP. No one ever took it standing up, and it was sky high when they would take it sitting or laying down, so I am sure that they just assumed that it got worse when I was vertical. So, I probably spent MONTHS in bed for no reason and actually made my BP worse! LOL. Seriously.

Meanwhile, I've been sort of unraveling everything that has to do with food in my world, and I realized how many habits I developed out of a desire to eat "normally." Because, that's what you're supposed to do, right? Except, I honestly will go weeks, if not months, without being hungry. And will feel pukey for months on end, which sure doesn't make me want to eat. Water has always made me pukey, too, unless it's really, really cold. Eating when I'm not hungry makes me pukey. And, then, sometimes I get CRAZY hungry. I remember saying all the time as a kid that I wished that we could just get all of our food in capsule form and never have to eat. I hated eating most of the time because it made me feel sick, and I didn't want to do it. If someone would just give me capsules of food right now, I'd probably only eat once a month or so quite happily, and only to try some new and interesting food. I like to go to restaurants and eat interesting food because it is the only way that I can make myself interested in eating.

But, if I actually only eat when I'm hungry, and only eat what sounds edible to me, I probably take in around 700-800 calories per day. God knows you're not supposed to do that. Plus, I don't even lose any weight, I just maintain my weight. And, sometimes, I suddenly gain weight (like 5-10 lbs in one week), without changing how I eat at all. Those gains usually coincide with feeling really sick, too. The kids' pedi said that they have found that, pretty much no matter what, you shouldn't try to get kids to eat because they will self-regulate. If their metabolisms are crazy low, and they need almost nothing to maintain, they will eat that little. Then, if their metabolisms pick up, they will naturally increase their food intake. Well, I guess that's what I tried to do, but then I started listening to everyone who told me what I "should" do, and totally messed myself up.

I've been waiting to see a new rheumo for well over a month now, probably even longer, and I finally got in to see her today. She had read my chart beforehand, and we went over the basic story, and then she did a history and an exam. One thing that I loved about her was that she examined my skin and my nails, and asked about my hair. I've read a ton recently about how much those reflect internal issues, and was totally stunned that the (crappy) derm I saw recently didn't look at any of them other than the couple of things that I specifically asked him about. She was the first rheumo I've seen who did, too (and she is lucky number 3).

At any rate, she ordered a whole bunch of new tests. I think that she used the word "amazing" to describe the fact that some of these (very basic) metabolic tests have never been run on me, even after 3 years of very actively pursuing a diagnosis. She sat there looking through all of my bloodwork and there were like 1239123912 autoimmune panels of various sorts, and even re-running the same ones over and over again, but pretty much nothing that points to anything else. It's like someone decided somewhere along the way that it was AI or nothing. As she was looking through my chart, she said: "We've run tons of tests, and x-rays, and CTs, and MRIs and in this type of disorder they will often be normal. But, that doesn't mean that there is nothing wrong. It just means that we haven't run the right test, and we haven't found it yet." In that moment, I knew that this woman was going to change my life.

They took like 10 vials of blood today, and that wasn't even all of it. Apparently, some of the tests that she ordered aren't done at my clinic, or even their normal third-party lab, so they have to call around and find out where I can actually get these tests done. They don't even have the right tubes for them, so they couldn't take my blood at all! These are just normal blood tests, though, so when they eventually figure out where to do it, I'll get the results quickly. She told me that she will review my chart again, and then review the lab work, and we will have a follow up in two weeks. At that point, she said that she will have a better idea of where to go from here. That makes sense to me. She threw out a few things, all of which I've come across in my own research, and it sounded like we're heading down the right path.

Meanwhile, Lydia's neuro put in the order for the genetic testing before she left on vacation, so I will be having that blood taken next week. That is the big long blood work, though. Apparently, it can take as long as 3 months to get the results! And, multiple doctors have told me that we may still have to do a muscle biopsy if the genetic testing comes back negative, because it only has been mapped to so many mutations (or something). The muscle biopsies can "prove" mito (and other genetic disorders, for that matter) when we don't have the tests identified for the DNA mutation itself that is causing the issue. This rheumo mentioned a muscle biopsy and something else that sounded unpleasant, too, so I think that I am pretty much going to have to have one no matter what. But, at least we're starting with bloodwork and working our way up.

I've really, desperately needed someone to coordinate my care, and today this rheumo was talking about working with my neuro and Children's and potentially even Mayo to sort all of this out, and come up with a cohesive plan for treatment (management?), and it was such a weight off my shoulders to realize that I don't NEED to find a new PCP anymore. PCPs don't manage this kind of shit. Hell, the best doctors I see these days constantly tell me how complicated, and interesting, and rare all of this is, and how they need to work with tons of other doctors to help me. No one doctor can treat this, and even if they could, it sure as shit wouldn't be a PCP. But, now, I found someone who can at least coordinate across multiple doctors, and I can step back and let her do her thing. I SO do not want to be a rheumo. God bless this woman for doing it, so I can stop.

Tomorrow, I am having an EEG and a brain MRI. They want me to be sleep deprived for the EEG, which is kind of funny to me for some reason. I don't really think that I have ever had any sort of seizure, but Lydia is having what appear to be absence seizures, so they might as well test me. And, besides, absence seizures would be incredibly easy to miss. The brain MRI will be much more interesting, I think, since there can be a variety of findings in an MRI that would indicate progression of various types of genetic disorders. Or, nothing at all. I had a completely normal brain MRI in 2009, so any deviation from that will be interesting in and of itself.

One thing that I am starting to come to terms with, a little bit, is the idea of being different. It sounds silly, because of course I've always been different in many ways, but I think that I tried very hard to fit in pretty much my entire life. When every single experience that you have is different from the norm, down to how your body metabolizes energy, I guess that you look very hard for ways to conform to what everyone tells you is reality. Well, maybe it is reality for 90% of people, but it has never been for me. As much as I'd like it to be, it just isn't. Still, I'm just another person, and I fall into a billion stereotypes of my own. I suspect that we all are different and normal in our own ways, really. However, that said, the whole health shebang is definitely an area where I am "special" and, most likely, so are my kids. That made me angry as a kid, and I became determined to prove the entire world wrong. You don't know me! You don't know my life! Well, I'm old and sick of that shebang now, and I don't really feel like I need to prove anything to anyone. Instead, I'd like to come to terms with my own abilities and limitations, and those of my kids, and simply live in harmony with them.

In other news, we're moving this weekend and I decided that was a good enough reason to cancel school for the week. Homeschool FTW!

This afternoon, I was putting puzzles together with Lydia on my lap and this was my view. That's our awesome nanny, Ana. Seriously, I don't know what I'd do without her! She's been with me since May? June? 2008. So, so lucky to have her.

P.S. I so want to be a baby. No one else actually looks CUTE with major hat hair!

On Love and Marriage

2012-02-14T22:52:00.001-08:00

I have a couple of posts in my head right now but, since it's Valentine's Day, I might as well write this one!

I've been thinking about love and marriage a lot over the past few months. I think that we all sort of rehash things after a relationship ends, and when you're going through your third divorce, it is clearly time to really try to figure out where you're going wrong. I've come to a lot of conclusions that actually have very little to do with marriage, and I have all sorts of open questions about marriage itself.

This week, my state signed gay marriage into law. And I wholeheartedly support that. As long as marriage is a legal institution, it should not discriminate. However, I kind of wonder why it is at all. It seems like marriage means something different to almost everyone who enters into it. Why can't we just let each of those groups define marriage however they want, and make it into whatever it means to them, with no legal meaning whatsoever? Why can't we replace marriage with civil unions in the legal arena, and open those up to any two consenting adults who want to mix their finances, property, etc? It sure seems like everyone would be happier that way.

Recently, James told me that marriage is outdated and that there was no reason for anyone to get married. He said his sister and her boyfriend have been together for many years and do not feel any need to get married. I think that I laughed and told him that I must've really fucked him up if he was that bitter about marriage, but I have given the idea some thought since. Is marriage really relevant anymore?

Well, from a practical standpoint, I think that a civil union renders marriage irrelevant legally (if the same rights that currently exist we're given to civil unions). But, I think that marriage has a legal and a social/cultural meaning, and that is part of the problem. The government shouldn't be in the business of regulating religious and social institutions.

At any rate, I thought about what it is that really appeals to me about marriage. And, then I talked to other people to see what appealed to them, and I read stories about why gays in my state wanted to get married. In the end, common themes among all of us were: health/end of life decisions, ownership/rights to our stuff when we die, and being able to point to someone and say "husband."

The first two are simple. You don't need anything beyond a few legal documents to achieve those, and you can bestow those rights on anyone regardless of whether you decide to swap spit. But, that last one is trickier. Why is it that, at a certain point, you look at someone and feel like you need to be able to say husband? What is it that you mean by that?

A friend of mine said recently that she wanted to be able to point to her boyfriend and tell the world that he is her husband. So, I guess what we all really want is the sense of being part of a whole, forever, and having the whole world know it.

Personally, I am not sure whether anything much lasts forever. Things change and evolve so much that forever seems almost inconceivable, and if something changes dramatically it's hard to know whether it's even still the same thing anymore. But, when I look at my own life, the one thing that has remained constant is the love that I have felt for people. I've never stopped loving the people that I really, truly loved, no matter how much it evolved or changed through time. No matter what they did, or how they treated me, I still loved them. Through time, I learned that you can love someone with every fiber of your being, and still choose to walk away. And even be glad that you did! But, that love never went away, at least for me.

So, maybe, at its core, marriage should be about love. Nothing more, nothing less. No rules, no games, no "good on paper." Just love. I wonder what would happen if we all stopped trying to love who we thought was good for us, and started trying to make our lives good with the people we love. That might not always look the same, and I don't think that it has to. Love doesn't look the same, so why should an expression of love?

If the world ever adopts my civil union/marriage split, I would very much like to get married, but I would never enter into a civil union. I've had enough of the legal side to last me a lifetime.

Understanding

2012-02-13T10:39:00.001-08:00

There is nothing in this world that is worse than watching your children suffer. I wrote yesterday about my pain level, but I'd gladly take on a million times more pain if it would spare my kids even a day of suffering.

Alice and Charlotte may be feeling more heard, but they are also clearly experiencing escalating health problems. Alice is often very pale with bright red cheeks and lips, and just wants to lay on the couch watching her favorite movie or listening to the soundtrack for hours. She told me the other day that her heart pumps too fast so I took her pulse a few times and it's been well over 100 every time she says it. Just laying there. Meanwhile, she threw up and had explosive diarrhea Saturday night. She hasn't wanted to eat much since, so I've been trying to find anything that she will eat. She doesn't want to drink, either, but I found some sparkling water with juice that she calls soda and will drink.

Charlotte has to run to the bathroom multiple times per day. She talks about her stomach hurting constantly. She, too, spends most of her time resting now. Her stomach even wakes her up at night. She eats a lot, and is unable to control her emotions as she wears out. She screams and cries the worse she feels.

Today, both of the babies are struggling. Their temps were 96.5 and 97.1 after we got them dressed this morning, so they are now wearing double pants and sweaters. That brought them up to the high 97s. They both have runny noses, are very pale, and have flushed cheeks and bright red lips. Sophia had an explosive diaper that coated her in poop up to her belly button, and she has a rash. Lydia is walking a little bit today, but Sophia isn't. Lydia's right eyelid is bright red. They both just want to be held, which is always a sign that they aren't feeling well.

And, of course, the older kids and I have the same issues, all to varying degrees. But at least we can understand what is going on, to at least some extent. The littles just want me to make them better.

One of the hardest things right now is Robert. He will not listen to me about anything, and he has been unwilling to reduce the babies' activity level. Yesterday, he took them on two walks, to a bakery, and to the children's museum, in addition to all of the normal stuff like bathing, meals, playtime, etc. Every time that he does that, they struggle the next day. I've told him this, but he doesn't stop. He doesn't respond to most of my posts about Mito or the information that I try to share with him in the Facebook group.

I don't know why Robert does anything, but it's so hard when it results in obvious harm to the babies. Jared said today that he is afraid for the babies because he doesn't even know whether they are safe with Robert. He wants to know why he won't slow down with them. He wants to know why Robert doesn't look at them and see them struggling when even Jared can see it. I want to know, too. But, I don't. I probably never will and, even if someone told me why, I wouldn't understand it, anyway.

My heart hurts for all of us.

Finding Peace

2012-02-12T10:53:00.001-08:00

Today is not a good day. I'm tapering off Prednisone, which I'm actually thrilled to be doing, but I am rapidly discovering just how much pain it was masking. To put it mildly, ouch.

On the one hand, I'm ecstatic to be getting off the Prednisone and it is wonderful to know now that it wasn't doing anything to treat my underlying issues. I can get off it and never look back, and that is awesome considering the pure evil that is long-term Prednisone use. I've been on 80 mg per day for about a year, so it's definitely time to kick it to the curb.

On the other hand, this pain is no joke. I thought I was in pain before. Ha! Everything hurts, and everything is out of wack. Does the pain put enough strain on my body to cause the other symptoms or was the Prednisone doing something inherently that helped them? I'm not sure, really. But, I know that steroids and Mito don't mix, so it's time to find a better way to manage the pain.

So far, I find that heat helps. Lots of warm baths. I'm going to buy a heating pad, too. Maybe some of those heat patches. But, those only help when I am actually doing them. So, I'm hopeful that the chiro will help a bit, and I'm also going to try out acupuncture, massage, and PT.

I've thought about asking for some sort of medication to help with the pain, and I may end up with one, but I definitely do not want anything mind-altering, addictive, or that causes nausea. I have a hard enough time eating already. The last thing I need is more nausea or stomach issues!

The thing about Mito that is kind of funny is that it is basically (in the form that we seem to have) like the normal aging process on crack. I have had like every doctor I see recently mention that whatever I am there for is normal in elderly patients, but I am too young. I have age spots! My hair is turning completely grey now! And on and on. I'm like a 33 year old trapped in the body of a 75 year old.

Now that we have ruled out all of the normal abnormal stuff, every doctor is suddenly excited by me. They talk fast and pull up Google and say again and again how interesting this is. And they are right, really. This stuff is fascinating. I get excited by it, too. But, I also know that my health condition seems to roughly equate to my mother's right now and Lydia's seems to roughly equate to mine. This may be interesting, but it is also heartbreaking. Perhaps that is why every appointment seems to end a little awkwardly. I guess no one really knows what to say after that initial diagnostic excitement wears off.

There are many forms of Mito, even when confined solely to those passed through mtDNA. They have been clumped into syndromes, but do many of the symptoms overlap that it's exhausting to try to guess at which one it might be. There are some that can be easily excluded, but a few that remain possibilities. Reading at 33 that death in the third or fourth decade of life is common in some is not awesome. I don't know whether I have one of those forms yet, or whether some of my kids do.

It's funny now to think back to when myasthenia gravis seemed so awful. And, don't get me wrong, it is awful. But it can usually be relatively well-managed with meds. I was so miserable because I didn't HAVE MG! I wish that I did.

It's been interesting to read my old journals as I get them ready to publish. I was so, so young. I was constantly talking about being sick or not feeling well, and then wondering why I had no energy. I used words like "depressed" for the feeling of no energy. I didn't know how to explain how I felt, so I listened to others and tried to fit myself into what they described. I had no idea how different my experiences were from the norm. It was only a few weeks ago, in fact, that I began to realize that and it was only because I finally sat down and started asking "normal" people very specific questions about their health. I never could've put that together at 23, that's for sure.

It's amazing, though, how much things have improved for all of us since I began to recognize what was going on with the kids. The floodgates have opened and they talk so much now about how they feel, and they do a good job of self-adjusting most of the time. I don't push them to rest, and I am finding that I don't need to. They put themselves to bed, they rest on the couch, they rest with me in bed, and so on. They are learning to accommodate their bodies, and that I will listen to them when they want to talk. Charlotte doesn't tantrum much anymore. I guess that she doesn't need to.

Part of recognizing reality is accepting your own limits and when to ask for help. I think that it's just as important to recognize who is the appropriate person to ask and how. Just because I need help doesn't mean that it's okay to flail around and try to get everyone I know to help me. Instead, I have tried to identify appropriate sources for different things. My therapist for the emotional side. A few good friends for the support/friendship side. A truly great nanny for the day-to-day kid care side. Good doctors for the medical side. A lawyer who isn't litigious and who offers good advice in the face of a constant barrage for the legal side. Alternative treatment providers for the pain side. And so on.

I always wanted a partner but I realize now that I have nothing left to offer anyone and, at its core, a partnership requires two healthy individuals. Robert told me many times that he had hesitated to become involved with me because of my health problems, and i think that much of his treatment of me had to do with resenting that. But, that aside, I don't really need a partner right now. The needs that I have are largely met in other ways right now. As much as I like the idea of having someone by my side, it's just not my reality right now. And, well, it probably never will be. I'm learning to find my peace with that.

Book Two!

2012-02-11T08:22:00.001-08:00

This one came out to over 200 pages in paperback form. Craziness!

I will have them available to purchase in print on Amazon in a week or so, too.

http://www.amazon.com/Book-Two-Reporter-Homesteading-ebook/dp/B0077ZR16M/ref=pd_sim_kstore_1?ie=UTF8&m=AG56TWVU5XWC2

Palliative Care

2012-02-10T13:10:00.000-08:00

First of all, I'd like to say that Google's choice of ads for my blog is cracking my ass up. Cancer, depression, divorce for men, oh my! What an unpleasant collection of topics.

At any rate, it's been a medical-filled couple of days, as usual. I've been taking videos of Lydia and sending them to her neuro, as she recommended, and it seems to be helping her to better understand Lydia's patterns. I also send her pictures of the other kids periodically to illustrate similar symptoms among other children. And, she reads all of my own medical records.

Yesterday, I saw a chiropractor for the first time. She took a basic medical history, and then did a brief exam that largely consisted of having me move into a variety of positions while she touched some part of my back/pelvis. At the end of that exam, which lasted maybe 10 minutes, she sat down with one of those models of the spine and talked about her findings. I didn't tell her what the x-rays that my PCP had taken had shown, and what the chiro said exactly matched those x-rays. She pointed to all of the areas that were showing issues on the x-rays on her little spine model, and explained not only what was abnormal, but WHY.

Basically, what is happening is that my muscles are too weak to properly support my spine and neck. My weight then ends up being supported by my joints more than it should, which is why they are beginning to degenerate. This muscle weakness also results in extreme lumbar lardosis (back curvature), which in turn causes the rest of my back to begin curving, as well. My neck is both off-center and being pushed forward. Because the brain tries the most to protect essential systems, it tries to basically shunt energy to those muscles to protect my spinal cord. Except that my muscles can only do so much and, eventually, tired muscles begin to spasm. So, my pain is "caused" by a variety of things, really. My spine is out of wack, my muscles are straining, she suspects my connective tissues are probably a mess (and told me that the rheumo that I've been waiting to see for months now is AMAZING, so I am super excited about that appointment now!), my muscles are spasming, my joint degeneration is starting to cause joint pain, and I also cause some of my own pain by compensating for weak muscles by using other ones improperly.

At any rate, listening to her was very interesting because everything that she said absolutely aligned with the "evidence" on the x-rays, and my own research, but she was the first person to actually put it together in a simple way. She also didn't try to sell me on anything, that's for sure. She flat out told me that diagnosing my underlying condition is outside of her ability to do, and that she can't "fix" me. She told me that all that she can offer me is palliative care, and that she might be able to reduce the pain level by about one degree. We'll just have to try it and see what happens, really. But, reducing the pain by one degree sounds good to me, and particularly since nothing that she does involves medications or supplements. What if I can find 3 or 4 ways to reduce the pain by one degree without medications? That starts to make a real, meaningful difference in my quality of life.

Speaking of medications, my thoughts on those are somewhat complicated. I'm not anti-science in any way. However, I think that we have been conditioned to believe that FDA approval means a lot more than it really does. Yes, there are rules and requirements surrounding the drug approval process. But, have you read the list of side effects on even relatively benign medications? So many of these medications cause so many other issues, and those are just the ones that we are aware of right now. We are constantly learning more, and evolving our understanding about pretty much everything. What has been ruled "safe" today may very well be found to be harmful in 5, 10, or 20 years.

I suppose that one response to that is to decide that all medication is evil and stop taking all of it. However, I'm not a fan of throwing the baby out with the bathwater. I think that medication simply requires a very careful analysis of whether it makes sense to use it in each individual's circumstances. My blood pressure is all out of wack right now, and it sure as shit makes sense for me to take BP meds. While these medications do have side effects, the benefits still outweigh those risks for me right now. However, while it is important to treat my hypertension, I think that it is unfortunate just how often medical care begins and ends right there. Giving someone a prescription, and then pointing to a normal blood pressure, is akin to slapping a band-aid on hemorrage. Sure, you don't see that yucky blood anymore, but it's still bleeding. Figure out how to stop the bleeding and then you won't need that band-aid anymore.

This morning, the neuro-opthamologists that I have been waiting to see for ages called me and offered me a cancellation appointment. I jumped at it because they have been my real hope for some sort of plan. My eyes are among my most troublesome symptoms, and cause so much of my headaches and pain, that I was really hopeful that they would be able to provide some insight into what is causing all of that, and a plan for making it better.

Well, on the one hand, it was a really good appointment. Dr. Hamilton is a cool guy, and he certainly had plenty of information for me. He examined me and told me that my ocular presentation is not consistent with myasthenia gravis. He brought up myotonic dystrophy, which was something I'd come across in my own research, but said that it wasn't likely since I do not have difficulties releasing my grip on things and neither does anyone else in my family. There was another thing he brought up, too, but it also seemed unlikely. Familial ptosis is also pretty much ruled out because we have so many cases of early onset, shifting between eyes, and a few other things that he mentioned. He brought up CPEO, which is a mitochondrial disorder, and it is certainly a possibility, but he said that we'll probably end up needing a muscle biopsy to know for sure because there are so many different mitochondrial syndromes, and they all overlap where symptoms are concerned. He talked about mitochondrial disorders in general a fair amount and said that he thinks that we are absolutely on the right track. He works closely with the neuro-geneticist who I have been referred to, and he is sending him his notes. He gave me a couple of pointers about muscle biopsies, and when to have them done, and that was that.

As usual, I then asked about what I could do to actually make some of these symptoms better. There are surgeries, but the muscles just continue to weaken, and you end up needing them re-done down the line. Plus, if you do them too many times, you end up being unable to keep your lids closed and have all sorts of issues with dry eyes. There are also crutches for your glasses, but those look pretty damn uncomfortable. And... that was it. He told me that he would encourage me to wait until I pretty much can't see to have surgery done, and even then to do the least amount that they can possibly do.

So, I guess the good news is that I am not smoking crack with this mito path. It feels right, and it sure as shit seems to fit myself and my kids to the nth degree, and apparently it fits in the minds of trained professionals as well. Eventually, we will have the genetic testing and biopsies and may even be able to point to the exact mutation that has been causing all of us so much grief. But, no matter what we find on the genetic front, the reality is that this is not a curable disease. It is, basically, a palliative care condition. Certainly, we may need all sorts of doctors to help us to manage the various manifestations of this disease, but they won't be able to "fix" it. We will all just need to learn how to manage it and how to make our lives as good as we can, together.

When I was a little girl, I loved reading those godawful books about kids with cancer and brain tumors. I always, deep down, wished that I was them. I was so envious of those kids, with their teams of doctors and nurses, and people sitting by their bedside, listening to them, and giving them a plan, and helping them to fight what was attacking them. Even when they died, it seemed horrible, but kind of okay, too. I mean, we all die someday. Death is a part of life. Pain was a part of my life, even then. It was the knowledge of what was going on, and the support that they received, that was lacking in my own life.

We are all told many things about what it means to be a good parent. There are so many shoulds and should nots. I think that most of those are simply cultural constructs, in the end, most of which change and evolve so much that it is impossible to even be a good parent using them as a guide because they will change completely by the time that your own child even makes it to adulthood. When you strip all of that away, I find that what it really means to be a good parent is to provide your children with emotional support in every aspect of their lives. We all have instincts that guide us through age-appropriate developmental stages. All that parents really need to do is nourish the emotional side, while allowing their children the autonomy and independence to follow their natural instincts. Sometimes, nurturing the emotional side means setting clear limits and boundaries. Sometimes, it means listening and helping a child sort through things. Sometimes, it means guiding your child through scary situations. Really, it means all sorts of things. But, there is no one thing that anyone can point to that makes them a good parent. All of these things that we "do" to try to be good parents are largely irrelevant, and often even harmful, in the end.

At this point, I'm not sure what the next steps will be for us medically. We're waiting on so many different referrals to process simultaneously that it's anyone's guess which doctor we will see first, and where we will go from here. The kids' neuro is going to order some genetic testing on me, but that may not show anything. She's not a geneticist, and her scheduler called ME to ask which tests to run. We're shooting in the dark here. And, even once we send these tests out, they take months to come back. Diagnosing genetic disorders is not a short process. But, in the end, it doesn't really matter that much. We know that we're heading down the right path, and I am quickly identifying the various manifestations in each child, and lining up the appropriate testing/consults/therapies.

Often, I think that "palliative care" sounds hopeless. We're a quick fix society, after all. But, while I like the idea of a miracle cure as much as anyone, I've always been a fan of reality. There is no miracle cure, and I'm not going to live my life waiting or hoping for one. I'm going to live my life in reality, and find whatever I can to make my life and the lives of my children better.

Now, excuse me while I go lay down and try not to vomit. Luckily, I taught myself how to avoid throwing up many years ago.

Book One!

2012-02-10T09:01:00.001-08:00

http://www.amazon.com/Book-Homesteading-City-Journal-ebook/dp/B0077E6G3M/ref=sr_1_1?ie=UTF8&qid=1328894159&sr=8-1

Now to get the rest of them up! 2001 was quite a year.

Intentions

2012-02-09T22:18:00.000-08:00

After I asked Robert to move out, and he finally agreed to do so, I entered a period of my life that I can only describe as de-programming. The more that I was finally able to get away from him, and get back out into the real world, and have real conversations with people, the more that I was able to begin to see just how skewed and bizarre and downright horrific his treatment of me and the kids had been.

One of the things that I was hung up on for a very long time with James was the question of whether he was an alcoholic or just choosing to drink. To me, it mattered very much what his intentions were. I mean, that's how the legal system works, right? Intention is often the difference between walking away and spending your life behind bars. And, god knows that there are all sorts of dead white men who have waxed philosophical about intent.

Recently, however, I decided that intent may have a place in a court room (and I'm still not entirely sure how much it does) but it doesn't really matter much in terms of interpersonal relationships. It's pretty much impossible for me to ever really know why anyone does anything that they do. And, at the end of the day, if someone is drunk in a ditch all the time, and I've tried to help them, and tried to support them, and told them that they are hurting me, it really doesn't matter what their intentions are when they pick up that drink. What matters is that I do not want that person to continue hurting me, and they need to either go get themselves some help or be relegated to a place in my life where they can no longer hurt me. No one benefits from allowing a hurtful individual to remain in my life. Certainly not me, and I think that allowing people to hurt you actually ends up making them hurt themselves more, too. No thanks!

A friend recently shared a quote with me that said something about how forgiveness depends upon the belief that people who hurt you act from suffering rather than malice. I have thought long and hard about that idea recently. I realized that, in my mind, the two are indelibly intertwined. I think that people act with malice because they are suffering, and that suffering often spurs people to act with malice. It's one ugly cycle, really. And, the reality is that I will never be able to look at someone and puzzle out whether they are acting from a place of suffering or malice or douchebaggery or what. And, at a certain point, I just plain don't care. I feel compassion for them either way, really, but it doesn't change my decisions in my own life.

I've told my kids many times that, while we may have a variety of feelings about things in life, we are ultimately responsible for how we act. Our feelings may not be a choice, and that's fine. We can feel whatever the hell we feel, and that is how it should be. But, what we choose to do with those feelings is absolutely up to us. And, furthermore, no matter HOW someone else treats us, we are still ultimately responsible for how we choose to react.

Most of the time, when you realize that someone isn't a healthy force in your life, you can simply walk away. But, marriage and kids complicate that, and bind you together, no matter how much hurt it causes you.

When Robert first moved out, he insisted on visiting the babies here every single day. I tried to get him to agree to visitation that wasn't here at my house, or visitation that wasn't every day, or something to give us all some space but he wouldn't consider it. In retrospect, I don't think that he ever did a single thing while we were together that he did not want to do, and he certainly never compromised on anything. At any rate, I kept putting myself through hell with him day after day because I wanted to try to work with him, and to ease the pain of the divorce. He kept telling me how hard it was on him, and how upset he was, and how he just needed some time and then he would probably agree that the babies should reside primarily with me (he began the conversation with the proposal that all 7 kids live in this house, and he and I take turns living here with them...). We entered into all sorts of agreements, and I thought that we were going to be able to work together to at least some degree.

Then, one day, he emptied out the joint account to pay off credit cards, which he then closed. I think it was the following day that he filed for divorce. He served me, out of the blue, a few days later. Well, more accurately, he had my former boss and a mutual friend of ours serve me. At work. In the middle of a meeting with my manager. Included in the paperwork were probably over 100 pages out of my personal journal. I'd kept that journal since 2001, and I used it to pour out all of my thoughts and feelings whenever I needed to get something off my chest. I shared it online with some friends, but it was not intended for public reading. Robert knew how I felt about it, and had read portions of it while we were married without my permission, lied about it, and then later admitted it to me. He knew what a huge violation of trust it was that he had even read those entries, much less that he had downloaded them (either logged in as his sister or by getting her to do it for him...) and submitted them as court records. Furthermore, he took sentences entirely out of context and focused all of them on one, three-month period of time where I was very ill to support his argument that he had been the primary caregiver for the babies, and that I was an anxious, depressed, career-driven, workaholic invalid who, apparently, spent almost no time with my kids. I think that he said somewhere in there that I was good at "organizing" things, as a mother.

When I was handed that paperwork at work, and then saw all of those journal entries, it was one of the worst experiences of my life. I realized that I'd been lied to, and played, yet again and that Robert had managed to enlist others in his acts of betrayal, yet again. I'm also not an idiot, and I knew how bad that paperwork looked. I was hurt, betrayed, angry, and terrified for my children. I've seen Robert parent. I know what it was like to live with him. That paperwork could say that he was Christ himself, and it wouldn't change the truth of what it is like to live with Robert.

One good thing that came out of that debacle was the ability to speak to Robert's ex-wife. Her phone number was in his court documents, and I called her to ask about her experiences. I was still so hurt and so raw and downright confused by everything that, while I was beginning to see some of what he had been doing to me, I still couldn't wrap my mind around the enormity of it all. Speaking to her was amazing. Listening to her stories, and her experiences, and sharing my own was an incredibly validating experience. I had been afraid to trust in my own perceptions of Robert for a very long time, and there was finally someone who understood. Finally, there was someone who just knew, and who didn't ask me for proof of why I felt the way that I did. Because she didn't have to.

For most of my life, I have been asked to prove the "reasonableness" of how I feel. I have often applied a reasonableness standard to my life, as a a result, adopting a system of weighing evidence and looking for proof. No wonder law school fit me like a glove. I'd been living in a court of law my entire life. I'd been living in an adversarial system my entire life. The people who were supposed to listen, and believe, and support, and help largely never did.

Well, I'm tired of making the same mistakes. I have a new approach now. My new approach is to stop fighting. No one can fight with themselves. Until and unless I believe that something is going to result in substantial harm (okay, so I am still me, and I did still find some refuge in a legal standard...) to me or my kids, I'm pretty much just plain going to go with it. I am not going to spend my life fighting. My children and I have real problems to solve. Robert's mental health is his problem to solve, not mine.

Now, the idea of not fighting could mean many things. I'll probably wrestle with it a bit through time. But, in my mind, it doesn't mean being a doormat. It just means being strong, not allowing others to have power over me that they do not merit, accepting things that I can't change graciously, and never, ever losing sight of what I CAN do for myself and for my children. I'm not throwing up my hands and claiming helplessness in the least. Instead, I am prioritizing, I guess.

In the end, it doesn't matter to me whether my divorce is fair, reasonable, serves justice, brings out the truth, etc. I do not care whether it is painful along the way. It's a divorce, not a tea party. If Robert wants a passel of absurd and ridiculous things, and agreeing to them will get him out of my life and allow us to actually be divorced sometime this decade, fine. Okay! Want my address so you can stalk me? Okay! Want to pay me 8% of your salary in child support? Okay! Want to claim that my engagement ring is community property and you should get half of it? Okay! Want to attend every single doctor's appointment even though you have no idea WTF you're talking about? Okay! Want me to take pictures of the thermometer when they have a fever so I can "prove" it to you? Okay! Want me to provide you with every single thing that I have ever written on the Internet that includes your name or the babies' names? Okay!

I always wanted to write a book, but I could never decide what to write about. As a kid, I read a lot of fiction, and so I tried to write fiction, but it wasn't my passion. I always got bored a few pages into every story. Now, I have all sorts of ideas for books, but I think that half of the problem in this world is the deluge of books telling us what we need to do and how we need to be. I don't really want to write yet another one of those. In the end, I realized that what I've always really, truly wanted to do was tell my story. I wrote all of those journals because I wanted someone to listen and someone to help me. I didn't realize it then, but I was hurting and desperate, and I didn't know where to turn.

Well, I have the world's best therapist now, and I find that I don't need those journals in the same way anymore. I have a safe space to talk, and be heard, now. And, I have friends who support me, for real. I used to think that I needed that journal, and perhaps I did. But, I don't anymore. And, it doesn't feel safe to me anymore, because of Robert.

As part of his discovery request, he asked for my entire journal. That would, of course, include all of the entries I wrote after he moved out. At first, I wanted to object. I was perfectly comfortable providing them to the parenting evaluator, but I did not want him to read my personal writing. I think that it is completely outside of the realm of acceptable for him to even try. My journal entries have no bearing on my ability to parent my children, and he knows that. They are simply a means of control, manipulation, and humiliation to him.

In the end, I decided that words on a screen weren't worth fighting over. But, I also decided that I was going to do this my way. And so, tomorrow, my first book will be published. If my journal entries are going to be public, they are going to be really, really public.

Like I always say: Go big or go home.

Listening

2012-02-08T23:54:00.000-08:00

I don't remember very much about my childhood. I've never been quite sure why that is, really. On the one hand, my memory is crap, so maybe it's just par for the course. On the other hand, it does seem a little odd how little I actually remember. There are probably many reasons for that, but recently I've spent a lot of time thinking back to my childhood. I'm not really interested in remembering details per se because there are plenty of other people who can verify those. Rather, what I've been interested in remembering is how I actually felt on both the physical and emotional level. It's been one hell of a journey.

The most relevant part for me has really been in the context of my health as it pertains to my kids. The more that I think back to how I felt as a kid, the more targeted questions that I can ask family members, and the better sense I can get of my own health problems through time. The more that I know about my own health issues, the more that we can learn about the kids' health issues (particularly among the kids who can't actually tell us how they feel!). See prior guinea pig post.

My mom said recently that I have been sick "my entire life." And, she is right. But, I never would've said that before now. And, I had good reason not to. When I told people that my stomach hurt, for instance, I was subjected to unpleasant tests and then told that there was nothing wrong with me and THEN told that maybe I didn't want to go to school and that's why I said that my stomach hurt. Well, I remember my stomach hurting, and I also remember not wanting to go to school. As it turns out, the two are not mutually exclusive. In fact, perhaps I would've wanted to go to school if my stomach hadn't hurt! At any rate, the point is that no good came of being sick, so I guess that I decided at some point that I wasn't sick.

Awhile ago, Charlotte started having fits where she would start screaming and yelling, and cycling from one thing to another: "My tummy hurts," "I can't walk," "I'm cold," "I'm tired." I asked people about this, and they thought that it sounded like she might be anxious or having difficulty adjusting to more time at preschool or the new babies. All of those sounded like reasonable explanations. And they might all even be true. But, that doesn't mean that what she was SAYING wasn't also true. So, I started really, truly listening to what she was saying. When she told me that she was cold, I took her temperature. It was low. When she told me that she can't walk, I asked her if her legs were tired. When she said she was tired, I asked her if she wanted to rest. More often than not, she said yes and would either lay down on the couch or actually put herself to bed. Meanwhile, she talks about stomach aches ALL the time. And, you know what? My stomach hurts all the goddamn time, too.

I read recently that children with chronic illnesses often turn to self-blame and magical thinking around age 3 to try to explain why they are in pain. I told Charlotte the next day that, when her tummy hurts, it is not her fault. She told me that it is her fault, and started talking about not eating healthy food and not resting and not sleeping and not going potty. All of those little life lessons I'd encouraged her to learn were the only way that she could explain why her tummy hurt. "If we eat too much candy, sometimes we get tummy aches." "If you hold it too long when you have to go potty, it can make your tummy hurt." They are all true, but they aren't why her tummy hurts. And poor Charlotte has been going around thinking that, if she just drank a little more water or rested a little more or didn't eat that one piece of candy now and then, she wouldn't be in pain. My heart completely and utterly broke for her in that moment, and I have been spending a lot of time with her, encouraging her to talk to me about how she feels, and explaining that, sometimes, our bodies get tired and just don't work very well and things hurt. But, it's not our fault, and all she has to do is tell me and I will talk to a doctor and try to find a way to make it feel better. It has only been a few days, but she now thinks that her tummy aches are caused by a piece of a leaf growing in her tummy that is stuck, and wants the doctor to get it out, so I guess we're making at least some progress!

When James and I divorced, we were pretty amicable. We wrote the parenting plan in an hour in my living room, and we remained in contact via IM and such about the girls. As divorces go, it was pretty painless. And, we did a lot of things right. We minimized transitions. We had an age-appropriate visitation schedule. We were flexible. And so on. But, through time, it seemed like I was always picking up the pieces after a visit at his house. I'd send him rested, happy, content children and get home psychotic beasts waving lollipops. It was easy to make a lot of assumptions about what was going on when he had them, and assume that he was doing something "wrong" to cause all of these issues.

To a certain extent, I suppose there was at least some truth to that. Bedtime was a debacle at his house for awhile, and they certainly got less sleep there. And, he had a different approach to food and toys than I did. But, he was always an active, loving, engaged father and I really had no Earthly idea what went on at his house. I would ask him if they slept well, and he would say they had, and I'd see exhausted kids rubbing their eyes and wouldn't believe him. On a charitable day, I'd assume that he'd slept through them crying or something. But, I definitely assumed that he had to be doing SOMETHING to cause all of these issues.

Well, James and I talk more now, and I've watched him parent them, and it's become pretty clear that he isn't lying or misrepresenting their sleep habits. He admits when he has issues, and we've worked together to solve them. And, I am still left with children who come home exhausted and put themselves down for a nap after spending the day/night with him. And, after all of this time, I think that the real answer to why they are so exhausted the day after they see him is a very simple one. He's been more of a part-time parent. Historically, he did more "stuff" with them. They absolutely love and adore him, and they love all of the stuff that they do with him, but they can't keep up. They pay for it the next day, and that is what I see.

James and I have talked about this, and he's slowed down the pace (which, frankly, wasn't even that active to begin with), and they are doing much better after days with him now. Now, the problem is preschool. With it only being two days per week, it is very, very obvious that they are completely and utterly worn out the day after preschool. They used to like to go to preschool, and I think that they do enjoy preschool, but I also think that it wears them out. Alice talks about her "wobbly foot" and how she has trouble walking (and she's been waking up with a limp periodically for months) and Charlotte talks about being cold and tired there. She probably is. Their preschool is truly amazing, and wonderful, and they have so many great friends there. It makes me so sad to think of them struggling to make it through a day there. In the end, I am going to give it a little more time, but I think that I may need to drop it down to just two mornings per week. Then, they will still be able to nap and rest at home.

At any rate, the real point of all of this is that people have asked me repeatedly what changed. They have asked me about something I said two years ago and why I feel differently now. Or, they have mentioned that none of my kids seemed sick before. I guess it's a reasonable question to ask, from the outside. And, the answer is simple. The answer is that I stopped listening to what other people told me about myself and about my children, and I started really, truly listening to all of us. I stoppede accepting that all of this was "normal" and started looking for answers. I started investing real time and energy in figuring out how to help myself and my children. I started asking for help and didn't let my fears stop me from pursuing real answers and treatment on the medical front.

Not long before I left work, I had a really cool conversation with a co-worker. We were both excited about something, and bounced a bunch of ideas off each other. Before he left my office, I asked him probably 5 times whether he wanted to move forward with a specific idea. Each time, he said yes. A day or two later, I sent out an email outlining our idea (making sure to give him mutual credit for it!) and encouraging our respective managers to adopt it. He immediately replied and chastized me for sending such an email without talking to him first, and told me that I was not the first person to have that idea, and that I sounded silly for acting like it was a new idea. I told him that I didn't care whether I sounded silly, and I meant it. After all, isn't part of life throwing out ideas, some of which are silly or stupid? I am willing to sound like a total moron if the contributions that I make to a discussion enable us, as a group, to come to a workable solution.

And, really, it's been the same for me where my health and the health of my kids are concerned. I don't have to be right or have all of the answers. Sometimes, I probably will sound like a total moron. Sometimes, I may go down the completely wrong path. But, if I can figure out the right path to head down, and get us in to see the doctors that can help us, and learn every last thing that I can about how to make all of our lives better, that's all that I have to do right now.

One of the benefits of having been in pain of one form or another for pretty much my entire life is that I really, truly am not upset by pain most of the time. Pain is just something to be suffered through. It doesn't last forever. You survive. You learn to laugh and really, truly enjoy things even when you're in pain. You learn that pain doesn't have to mean misery. However, as much as I appreciate that and all, I would prefer that my kids not have to learn the same lesson. I can do a lot for their emotional well-being, but I need help for their physical well-being. I need doctors to listen to them, and to listen to me. And, thank god, they finally are.

I was thinking how funny it would be if it turns out that THIS ended up being my big, great contribution to the world. Jared was reading all sorts of complicated genetic stuff about mtDNA and how they have tracked specific mutations back to specific people of certain races. This is fancy new genetic stuff right here. Meanwhile, I have seven children. Three sets of twins. Three different fathers. mtDNA is only passed through the mother, and the amount of jacked up DNA in each egg varies. You want to explore mtDNA inheritance? Well, it seems like we're one hell of a case. Maybe, as we pursue our own journey to diagnosis, these geneticists (and I do, in fact, refer to multiple geneticists.... we're awesome like that) will learn something that will end up making things easier for others. I sure hope so.

Meanwhile, I am now personally the proud owner of a neurologist, a neuro-ophthamologist, and a neuro-geneticist. Plus pending referrals to a neuro-muscular specialist and a neurosomethingorother at Mayo. I also have my ever-expanding slew of "-ologists." My neuro is running an EEG and a brain MRI next week, and is finally tapering me off the godforsaken Prednisone, which is the best news I've had in ages. At this point, pretty much everyone has said that they can't diagnose any of us with any underlying issues that would cause all of our various issues/conditions since they have ruled out all of the non-genetic ones. Congratulations, you're all jacked up but completely "normal" on all of our lovely blood work! Ha. So, I guess that, for now, we simply keep treating all of the various issues and conditions, and wait on the lovely genetics people to tell us which parts of our DNA are jacked up (or, more accurately, mine, since they are testing me first). But, while we do that, I am making damn sure that all of these various conditions are finally really, truly identified and treated. I didn't have to live my entire life in pain, and I am sure as hell am not going to subject my children to that.

2012-02-07T12:58:00.000-08:00

actually i will learn about tuning a guitar, and reading books and maybe a movie about that.

Best of Both Worlds

2012-02-07T11:00:00.000-08:00

When I began this homeschooling adventure, one of my biggest questions was how best to approach it from the standpoint of kindergarteners. Or, whatever you want to call them. At any rate, it seemed pretty clear to me how to let older children guide their own educational paths, but I just wasn't sure how to do the same thing with much younger children. After all, four year olds certainly can't sit down each week and come up with a plan, deliverables, etc.

Recently, I dropped Alice and Charlotte down to only two days per week at preschool. In fact, this is only the second week of their reduced preschool schedule. But, it's already starting to work itself out in my mind. And, I'm finding that the answer to schooling, like everything else where parenting is concerned, is simply to listen to them and let their natural inclinations and interests guide us. Lately, they have been very interested in the human body and space. They love taking their blood pressure and their temperatures, and playing with various types of medical equipment (real ones!). Like most of us, when they learn something like what their pulse is, they then want to know what that means. What does the heart do? How does it work? What's it look like? And so on. Likewise, they have been very interested in the moon and the Earth lately. I've shown them the moon landing and various videos online, and we've also found our house using Google Earth. But, there is a whole world of information out there about the human body and the solar system, and they want more. So, what next?

I think it's tempting, when someone expresses an interest in something, to want to sit them down and tell them what to read, and everything you know about it. But, the fun of learning is in the discovery, I think. Being lectured is almost never interesting, even if you're actually interested in the topic itself. It's through asking questions, and listening to the answers, and participating in a dialogue that we really become engaged in what we're learning. That part of teaching is easy for me because I really have no desire to hear myself speak. I like to listen to my kids, and answer their crazy questions, and ask them questions of my own, and hear what they have to say. But, I don't know everything, that's for sure, and there are lots of other ways to learn, too. So, I've come up with a few ideas to try out.

Since the human body and space seem to be the interests du jour, I ordered a couple of things for them today. I got Melissa and Doug floor puzzles of the human body and the solar system. I also got coloring books of the human body and the solar system. And, a picture book/encyclopedia of each one. I'm not going to sit them down and "make" them do any of them, or even try to teach them anything as they use them. I'm simply going to let them explore them and ask whatever questions they have. That's the approach that I took before they started preschool, and they entered preschool dramatically ahead of other kids academically. Rather than trying to re-invent the wheel, I'm just going to keep doing what has always worked for me at this age, and try to trust that we will continue to muddle our way through together.

I think that it is always tempting to think that there is some perfect way to do something. All you need is the right library of books, or the right curriculum, or the right worksheets, or the right videos. And, I think it is true that there any many ways to educate your children. My children may not end up knowing everything that they would've learned had we followed one of those curriculums. But, I'm not really sure why people think that they need to. We have an entire lifetime to learn and to grow. There isn't a prize for aquiring the most knowledge and, at a certain point, does knowing random facts even help you? We live in a world where we have more access to information and data than ever before, and it's simply impossible for anyone to know everything. So, I think that we might as well just be true to ourselves, and learn about what interests us.

Sometimes, things go so far astray that the only way to really find your way back is to go way, way, way back and start over. That doesn't mean that you have to reject everything new and modern, but it does mean that I find myself evaluating what something really does for me a lot more than I used to. From TV to science to computers to social media, I often ask the question: "What good is this bringing into my life?" And, as a follow up question: "Is this the BEST way to achieve the same result?" Sometimes, I decide that it is. My iPhone is a prime example of that. Smart phones that work well are categorically awesome. But, often, I decide that it is not. Medicine, for instance, can treat many of my symptoms but I suspect that the real answers will be found in making modifications to my life.

When you've been raised as a child of the 80s, like I was, I think that it's very hard to accept that not everything that is possible is desirable. After all, we were all told that we could do and be anything. We all had the power to be great! We could work and be parents and get educations and own homes and be whatever we wanted to be! Yay us! Except, it turns out that "having it all" is exhausting even under the best of circumstances. I think that we all became so obsessed with the idea of being great that we turned everything that we do into some sort of crazy competition. Nothing is ever enough, really, because someone else is always doing more or having more. And, someone always will be.

My dad was telling me the other day about all of these people who were making six figures before the economy went to shit, and who are now finding that they are living better and are happier making like 20-30k. God knows, that's not how it is "supposed" to be. But, I've made six figures for a long time. Both of my last two husbands made six figures. And, I can tell you that, in my experience, maintaining the lifestyle that you're "supposed" to have as a certain socieoeconomic class is exhausting. You get the big house, and the big yard, and then you need people to clean it and care for it. And, then, you need to fill it with pretty things. And then you are supposed to take your kids to 123012301 activities to enrich them. And then you're supposed to look super hot and be fit. And then you need the fancy cars to haul your kids around in. And on and on and on. In the end, I found that the home that I had once loved became a nightmare of upkeep and expense! Plus, all of the pretty things that I'd always wanted were fun to buy, but then... what? Very few of them brought me any lasting happiness. But, I'd come to believe that all of those things were necessary, and I remember being so upset about giving up my house when James and I divorced.

Well, this time I have a very different attitude. First of all, Robert and I bought a house that we could categorically afford. However, it was a fixer, and that takes money and time. I did a lot of that, and used my stock awards to finish the basement and such, but a fixer is always going to require big, expensive projects. It's a 1920s Craftsman. It has charming features like power that periodically goes out to entire rooms. This is not the house for a single mother of 7, let me tell you. Lucky for me, I guess, Robert bought the house before we got married, and has decided to declare bankruptcy (for reasons that I cannot explain, so don't even bother asking me). So, had I wanted to keep the house (which I did, at first), I would've been SOL and/or could've engaged in some sort of long, exhausting legal fight to try to get this house considered community property, awarded to me, and then transferred into my name. However, ultimately, I decided that this is a good thing. The only things that I really like about owning a home are the ability to have pets of my choosing and decorating. So, I decided to make those requirements in a rental house. I figured that it might take me a long time to find the right rental, but I was okay with that. I was willing to just wait for the right house.

Lo and behold, I found the right house almost immediately. It's in my absolute favorite neighborhood, right by the lake. It's about the same size as this house, but it has THREE bathrooms! Since, sometimes, people pee in the frog potty (or the tub... yup, we're awesome like that!) because there is a line for the bathroom, having another bathroom is the best thing ever. Also, it has an eat-in area in the kitchen, which I'm super excited about. But, the best part is that the landlord is totally cool with pets and painting of all kinds. So, now, I'll get to do the stuff that I like, and can just call someone when something breaks. That is absolutely the best of both worlds in my mind.

Sometimes, it is easy to get caught up in the idea of what we think that we need. I'm finding that my needs and wants, when I really think about them, are actually pretty simple. And, even when they are expensive, there are often cheaper ways of getting them. For instance, I have always wanted a Louis Vuitton purse. Recently, someone on Facebook was selling one for $200. You can bet I jumped on that like whoa. So, now, I have my beloved LV bag, but will not have a heart attack if (when) one of my children or the dog destroys it.

Best of both worlds, I tell you.

2012-02-07T09:16:00.001-08:00

this week I will be doing glass blowing for homeschooling, and making a 15 minute presentation about how you do it, what i did, and how glass blowing works. i will also watch a algebra video, and i will take the SAT practice test untill i get 75% of the questions right. i will also go bowling, swimning, and revise my papers. finally i will find out something fun about NewYork.

Homeschooling, Week 6

2012-02-06T20:19:00.000-08:00

There has been a lot of difficulty and a variety of challenges in my life lately, and god knows there are some people who are doing their best to ensure that remains true, but it's amazing how many random little good acts of fate, luck, chance, or whatever you want to call them have happened over the past week or two. When one bad thing after another hits me, I generally don't tend to assume that there is any sort of higher power involved, but it's funny that I do start to wonder whether there is a greater force at work when all sorts of goodness begins to come my way.

At any rate, so much of the frustration in my life has been lifted recently, and I'm so grateful for that. It is clear that we are heading in the right direction. Even if it is a difficult one, I'm incredibly relieved that we seem to have finally found the right path. We definitely found the dog for us (through a bizarre series of circumstances that really shouldn't have happened!), I stumbled upon just the right rental house for us in just the right location, and a woman at the grocery store even bought half my groceries for me the other day! Plus, today, I got a call from our ped letting me know that she had spoken to our pedi neuro and they were referring us to the Mito Clinic at Children's. We will be seeing a biochemical geneticist there, and if anyone is going to figure this out, it is going to be them. This doctor is actively involved in Mito research, and even does studies that we might be able to participate in. This is some hope. Hope is good.

Me and Sophia (I love, love, love these fleece Hanna suit things! I got them for a steal at the outlet and they keep them super cozy for walks, park trips, etc. A major help since they immediately have issues when they get cold these days.)

I snapped this picture of Lydia this morning when I noticed that her lips were a bit blue when I picked her up from Robert. As soon as she gets cold or tired, she goes blue. I wish that I could wrap her up in bubble wrap and protect her from the entire world. While eating her chubby little legs!

Meanwhile, we had a little Super Bowl party yesterday. Well, okay, we had like two people over and ate a metric assload of junk food. Does that count as a party? Charlotte told me at one point that she didn't like our party because parties are supposed to have cake. I swear, everyone's a critic. And, for the record, my dad did actually bring cake! Anyway, Emilia's BFF came over and she tried to keep up with her and the puppy, and really overdid it. Sure enough, she was a total mess today, and spent most of the day in bed (with Milo!). I'd like to wrap her up in bubble wrap while I'm at it, too.

One thing that I'm trying to learn is how to parent kids with health challenges. When do you tell them to slow down? When do you let them figure it out for themselves? Certainly, that's different at different ages. But, I lived with someone who tried to control my health, and it was a complete and utter debacle that both made me completely miserable and made my health issues incredibly difficult to identify and treat. You can't put a condition like this on a schedule. You have to learn to recognize your own cues and to pace yourself, even at a young age, I think. Still, kids are kids, and it's hard for even adults to learn that sometimes fun stuff is too much. For now, I'm just listening to them and trying to guide them in the right direction without giving them too many do's and don'ts.

And, of course, life goes on. Schoolwork wasn't necessarily anyone's priority this week, but it (mostly) got done. Jared actually learned all sorts of things in addition to his topic because we had so many conversations about health and spirituality that he ended up doing a lot of research on his own. Learning is learning, and I think that we all learned a lot this week, even if it didn't quite follow the original plan.

On to this week!

Emilia:

- Weekly blog post (Wednesday, 8:30 pm)

- Bowling, swim once (Sunday, 8:30 pm)

- Complete Topic 8.1 to 8.3 here: http://www.free-ed.net/free-ed/Math/PreAlg01/default.asp (Sunday, 8:30 pm)

- Revise papers and turn in edited versions (Sunday, 8:30 pm)

- Weekly project (Sunday, 8:30 pm):
- Plant response to music experiment; start experiment and present results in a 5 minute presentation using a poster board; 1 page written summary of what you learned that week (to be continued the following week!)

- Write a short story that is at least 5 pages, and edit it before turning it in

- Find one interesting thing to share about NYC and one thing that you want to do while we're there!

Camden:

- Weekly blog post (Wednesday, 8:30 pm)

- Bowling, swim once (Sunday, 8:30 pm)

- Watch at least one of the algebra movies that I sent/we got from the library (Sunday, 8:30 pm)
- Take math SATs until you get a score of 75% correct or above (up from 68% last week)

- Revise papers and turn in edited versions (Sunday, 8:30 pm)

- Weekly project (Friday, 8:30 pm):
- Go to glass blowing class and prepare a 15-minute presentation about what you did, how you did it, how glass blowing works, using a poster board and pictures/drawings; 1 page written summary

- Find one interesting thing to share about NYC and one thing that you want to do while we're there!

Jared:

- Weekly blog post (Wednesday, 8:30 pm)

- Bowling, swim once (Sunday, 8:30 pm)

- Revise papers and turn in edited versions (Sunday, 8:30 pm)

- Using Python, write code to add two randomly-generated numbers together (Sunday, 8:30 pm)
- Do Evaluation and Exponent lessons here: http://www.purplemath.com/modules/ (Sunday, 8:30 pm)

- Weekly project (Sunday, 8:30 pm):
- SR71 Blackbird - Learn about the plane itself and its use during the Cold War; prepare a 15-minute presentation and PowerPoint deck

- Find one interesting thing to share about NYC and one thing that you want to do while we're there!

Alice painted this picture today. She said that it was "A flower, a dead flower, and you!" She seemed quite happy about it and, despite the dead flower part, it seemed like a happy picture to me, too.

More than just Symptoms

2012-02-05T23:17:00.000-08:00

Since I spend roughly half my life at one doctor or another these days, for either myself or my kids, I've had a lot of opportunities to witness medical care in action. I've also done a massive amount of my own research, which has made me come to understand some of the challenges that I think are facing doctors these days. While I don't have many answers to offer, I have found plenty of issues. The funny thing, though, is that I have found myself doing the same thing that I have criticized doctors for doing.

When I was diagnosed with myasthenia gravis, it never quite sat right with me. I never tested positive for any antibodies, and something like 90% of people do. Of the remaining 10%, something like 90% of THEM test positive for Musk antibodies, and I don't have those, either. But, I read all of the stuff online and I did have all of those symptoms, so it seemed possible enough. However, I could never quite tell whether the meds were actually helping me. Certainly, my condition fluctuated dramatically through the course of a day or week, but it never quite seemed to coincide quite right with my medication schedule. I tried going off the meds, and back on, and spacing them differently, and got all sorts of results. It just plain didn't make any sense.

One day, I was talking to my mom on the phone and listening to her describe her latest test result, when it suddenly hit me. She had what I had. It was suddenly so obvious to me. All of the various test results and conditions she'd been diagnosed with were all manifestations of the same symptoms that I experienced. I talked to my neuro about her, and he said that he thought that whatever form of MG I had was a genetic seronegative form. So, I immediately told her what to do. "You have MG. Take these meds. Talk to these doctors. Get this kind of help." She did some of it, but those drugs didn't seem to help her. In fact, they didn't help her.

Still thinking like a doctor, I did more and more research into the idea of a genetic seronegative form of MG. Well, there are all sorts of studies indicating that they exist, but they don't really seem to actually be anything different from the congenital myasthenic syndromes. I eventually talked to my kids' neuro about that, and she confirmed that my understanding was correct. So, okay, if it wasn't MG, therefore it had to be CMS. I learned more about CMS than any of the neuros in town, I think, and I did manage to find a couple of particular forms that matched the symptoms. And, for awhile, I was quite impressed with myself and my brilliance. Except that, well, CMS really only accounts for muscle weakness. Sure, that can manifest all over the body, but what about all of these other issues my mom and I both have?!

Like a true scientist, I then went on a search for a disease that matched THOSE symptoms. A systemic AI condition sure fit the bill. In fact, my mom and I both met the diagnostic criteria for Lupus when considered over a lengthy period of time. However, there was one teensy little problem. Neither of us have ever had a positive ANA and something like 90% of Lupus patients do. They have tested me for Lupus roughly 1349123912931 times at this point and, no matter how many times they test me, I do not have a positive ANA. In fact, the more that I thought about it, the more that I realized that I have NEVER had a single test result that would only be indicative of an AI condition. The one and only antibody that I've ever had elevated was anticardiolipin antibodies and that is one hell of a soft marker. And, as it turns out, the same is true of my mother. The more that I thought about it, the more that I realized that the only type of conditions that we know for sure exist in our family are genetic ones. So, what if all of these "autoimmune" problems that we've all been diagnosed with were never AI conditions at all? What if we'd been trying to stuff a square peg in a round hole all along?

While I was in the hospital, I talked to the inpatient neuro about my original single fiber EMG. That was the one and only test result that they used to confirm my MG diagnosis. She said that it was also consistent with a myopathy. As it turns out, there are only so many myopathies that are inherited in an autosomal dominant manner (and that actually match my symptoms!). I was able to weed through those pretty quickly and begin to narrow it down substantially. In the end, the only real possibility was a mitochondrial myopathy.

Mito has led me down the most terrifying path of my life, that's for sure. But, at the same time, it's been incredibly comforting to me on a very selfish and personal level. When I would read about MG, it was like I'd found kindred spirits. Reading about CMS was like finding good friends. Reading about mito is like finding my soulmate. Every single bizarre thing that I've experienced health-wise from the time that I can remember is mentioned in some mito article or some mito board. All of the things that never added up, and never made any sense, and that people told me were impossible are mentioned and explained and accounted for. Finally, there may be an answer for why I've felt this way for my entire life. Finally, there may be a single link that ties everything together. How often do you get that kind of satisfaction in life, really?

Granted, it's not like mito is a picnic. In fact, I'm currently living in a state of terror because mito impacts different individuals in so many different ways, and I do not yet know if any of us have it or which form. I look back at my family tree and there are people dropping dead at 19 and 29. I look at my kids and have no idea what their futures hold. Clearly, I'm not going to just drop dead. Whatever form I have, if I have it, is obviously not one of those. But, what about my kids? Talk about playing genetic Russian roulette. Seven kids, seven great big question marks.

At any rate, what I have learned from this experience is twofold. First of all, when you're trying really, really hard to make something fit, and you're relying on the "unique and beautiful snowflake" rationale, it's probably a crock of shit. Second of all, the sheer volume of information available is impossible for anyone to consume in anything even remotely resembling the length of an average doctor's visit. How on Earth do we expect doctors to be able to piece all of this together and accurately diagnose people when they have 30 minutes per patient, if they are lucky? Granted, I'm not a doctor, so it probably took me 10 times as long to get this far, but it has probably taken me 300+ hours of research to get to the point where we are able to pinpoint which genetic tests to run... and to even realize that we NEED to run genetic tests! It's not like I spoonfed any of these doctors the specific mutations to test for or something, but we would never have gotten here if I hadn't done this much research. In the end, our pedi neuro is awesome and I think that she was going down the same path on her own, anyway, because I never even talked to her about mito and then found out she wanted to run the mito testing on me. But, the point is that I only GOT the kids to a pedi neuro because I went through two billion years of testing and doctors and research on me first. Our sweet, lovely pedi just kept telling me how normal everything was. And, you know what? All of those signs and symptoms probably ARE normal when considered alone. But, when you have SEVEN kids presenting with all of these signs and symptoms and a grandmother with them, and a mother with them, it's time to stop talking normal and start looking for answers.

Interestingly, I have found that pediatric care is about 1234901231230 times better than anything that I've been able to get. Do the good doctors go into peds, or is it just that peds (even specialists) listen more closely and pay more attention to their patients? Peds don't go around telling their patients that they are just too stressed out, or overworked, or depressed. They actually listen to them. Interestingly, they also don't order 1340123012 tests out of a desire to spare the kids the trauma. I wonder whether having to rely more on their own perceptions, and less on tests, makes them better at diagnosing. Certainly, when I stopped thinking of myself and my mother in terms of catalogues of symptoms, and went back and remembered how I'd actually felt during my childhood, I was able to go down the right path from a medical standpoint.

I read recently that doctors were able to predict cancer results in patients with something like 95% accuracy just by taking a family history, life history, and getting a sense of their personalities. After my experiences recently, this no longer surprises me.

Mapping genes to disorders is flashy and cool, but I wonder what it's really getting us. Someday, we may perfectly understand the complex interplay between genetic disorders, AI conditions, and cancer. But, what will that really matter? The more that we treat all of their various symptoms, the more that we just cause one of the others. It seems obvious to me that the human body relies on a very delicate balance and any major disruption to any of those areas will result in medical conditions that, when you treat them, will result in imbalances in the others, which will cause other medical conditions. So, sure, you have an AI condition so you take anti-rejection meds and give yourself cancer. Did you know that something like 70% or more of people who they performed autopsies on had cancer cells? Cancer is not somehow unique and beautiful. None of this is unique and beautiful. It's just a whole lot of imbalances in the human body that we're largely bringing upon ourselves.

Now, sure, I didn't do jack shit to deserve the genetic hand that I've been dealt (literally and figuratively!). But, who cares? The point is that our entire society is out of balance, and I think that's why we're seeing such a huge rise in all of these various issues that, at first glance, appear unrelated. While the average lifespan might be longer than it used to be, does anyone really, truly want to just live a little bit longer if it means less good time? I have no desire to live forever, that's for sure. I just want to live a good life for however long I'm around.

"If you don't like something, change it. If you can't change it, change your attitude." - Maya Angelou

Family Bucket List

2012-02-05T11:52:00.000-08:00

It's funny how different the idea of "normal" can be. I've thought a lot about what it means to be normal, or to preserve a sense of normalcy in the face of transitions, challenges, and hardships, but I'm finding that there really is no such thing as a static idea of "normal." Normal is just what feels comfortable to you, I guess. And, certainly, that shifts and evolves and changes through time quite naturally. As infants, normal means being in almost constant contact with our mothers; by even the toddler stage, normal means exploring and then returning for comfort; by adulthood, it largely means being an autonomous individual with a network of support people, rather than a couple of primary attachment figures. Despite the fact that "normal" shifts and evolves, I think that we're all pretty much just humans adapting to change, and it is just as dangerous to think that we're all somehow different than it is to ignore the fact that "normal" naturally changes and evolves through time.

When you face the idea that you and some or all of your children may be facing a shortened life span and/or serious health challenges, it seems like a radical departure from "normal." And, I guess, it is a departure in the sense of average life spans and average experiences. But, it's not like you're born knowing when you're going to die or what health problems you may encounter along the way. The Mito clinic at Seattle Children's wants to someday test all children for Mito, so maybe you will someday have a blueprint of your expected health issues and lifespan from birth. But, for now, it's a crapshoot for the most part. And, even if you do get your genes mapped to various issues, it's rarely a perfect projection. Individual humans do not follow perfect charts and progressions. All that we really know is that, someday, we're all going to die.

It makes me wonder how on Earth our society evolved the way that it did. We all know that we're going to die, and that we have an average of around 80 years on this planet, and we spend SO much time making money, acquiring possessions, and racing around like crazy people trying to cram more and more into every moment. Even perfectly healthy people talk about being stressed out, exhausted, and depressed constantly. And, really, it's no wonder. We're social animals, and we have created an isolated society that measures worth in terms of productivity. How did we get here?

Well, there are probably many reasons for that, and you can certainly trace many of them by looking back at history. And, I think it's fairly obvious what the natural progression of this kind of life has been in the past, and where it will lead us now. Nations and empires have come and gone throughout history, and America is no exception. Frankly, I don't think it matters much. It's too bad that people become so attached to the idea of a particular nation that they are often so unwilling to admit when it's time to just plain start over. Take a deep breath and reboot is often the best advice in computers and in life.

At any rate, I think that thinking about what you really, truly want from life is something that we are often actually discouraged from doing. There are so many "shoulds" in this world, and so many people who want to weigh in on how we should live, that it can seem almost impossible to figure out your own way and your own path. But, if you're actually going to get something out of your life, and contribute to the world in a meaningful way, I think that you have to love what you do, and do what you love. As I've said before, passion breeds results. And, no matter how hard you try, you can't force passion in yourself or others. And, you can't really force results without passion, either. Sure, you can go to work day in and day out and do a job you hate, but will you ever do anything great at that job? Are great works of art created by people who create them out of a sense of duty or obligation? Of course not. And, the same principle applies from everything to child-rearing to computer programming.

When I look around my house, I see a passel of passionate, inquisitive, confident individuals. Frankly, I'm not always sure of how best to promote their growth toward autonomy and independence. But, I do know that it is not through giving in to my own fears for them. It is by trusting in them, and accepting that we are all human and make mistakes, and providing forgiveness rather than condemnation. Forgiveness does not imply acceptance that behavior is okay, and even my children can understand that. They do not need me to tell them that a lie is wrong, for instance. They know that it is wrong, and they innately feel badly for having lied. In the end, they do not lie to me because they do not like how they feel about themselves when they lie. It's a pretty simple concept, really.

I wonder what this world would be like if children were always raised in a truly Christ-like manner. Jesus accepted human frailties, and even asked his father to forgive his murderers. Sure, there were some things that were bigger issues than others but, for the most part, when you think about Jesus and his message, it was one of love and acceptance. He loved and helped everyone, no matter how weak, sick, or astray they had gone. He never preached a message of perfection, or even of blame. It was one of tolerance of the idea that we are all flawed, but that we can love ourselves and each other even so. I guess that as only part God, the idea is that Jesus himself could never be God. Well, neither can we. So, why do we beat ourselves up when we make mistakes? Why do we get so caught up in a world of "shoulds" and "should nots"? Sadly, I suspect that it has an awful lot to do with power, oppression, and control.

At any rate, that's all very well and good, but what does it mean for my family? Well, it means re-defining what I want our life to be about. I may not believe in god per se, but I do believe that there is a meaning and purpose to life. I may not know exactly what it is, but I don't think that I have to. I just have to figure out how I want to live my life, and how I want to raise my kids. Rather than trying to come up with some big, grandiose plan on my own, I decided that one way to do that was to involve the kids in identifying what matters to them. I'm just one person out of eight in this house, and my ideas of what matters will never be exactly the same as theirs. So, the other night, I took the big kids out to dinner at one of our favorite restaurants and we made a family bucket list together! We ate delicious food, and laughed a lot, and had a really good time. It was also a really interesting experience for me because their choices were very different from what MY ideas of what all kids "should" get to do in their lifetime. These kids all know that they might have health challenges, and they didn't focus on big, grandiose things or experiences. We parents try so hard to give our kids "everything" or "the best," but do they even want these things, really, at their core?

The one rule behind the bucket list was that everyone had to agree before we added anything to the bucket list. And, through time, we may choose to change some of them, but we all have to agree on any changes! The idea is that this list represents things that we want to do together with at least one other member of the family; anything more personal would belong on an individual list. So, without further ado, I present our family bucket list! These are in no particular order.

1. Take a family photo in front of the statue of liberty holding mini statues of liberty
2. Build an interactive robot using a kit
3. Go parasailing
4. Get an aquarium and fish
5. Go to Germany
6. Go to Disneyland with everyone
7. See Wicked on Broadway
8. Get a dog
9. Go to the top of the Eiffel Tower eating french fries
10. See the Hunger Games on opening night
11. Go to an NFL game
12. Go to Japan
13. Go to Alaska and see a glacier
14. Visit the Great Wall of China
15. Try every Seattle-based major coffee company
16. Visit the Microsoft company store and museum
17. Go skydiving
18. Go in a submarine
22. Take the babies to a live kids' show/concert
23. Go to Niagara Falls
24. Visit Legoland
25. Go to Canada
26. Go to Ground Zero
27. Take everyone to Disneyworld
28. Go to the Empire State Building
29. Swim with dolphins
30. Stay in a treehouse hotel
31. Ride an elephant
32. Go surfing
33. Go rock climbing
34. Go hiking with James
35. Go to Carlo's bakery (from Cake Boss)
36. Eat a fried bug
37. Make iron grilled cheese sandwiches
38. Go canoeing
39. Go kayaking
40. Swim with sea turtles
41. Go to Central Park
42. See the Arc de Triomphe
43. Go to Africa
44. Go to a music concert
45. See the United Nations building
46. Go to one of Bobby Flay's restaurants
47. Ride the Eurotrain
48. Eat french onion soup in France
49. Visit a concentration camp
50. Make a fake grave for Hitler and throw rocks at it and then light it on fire
51. Visit a castle
52. Host a BBQ
53. Get baby chickens
54. Have each person paint a canvas and then hang them up in our house
55. Visit a nuclear power plant
56. Visit Starbucks headquarters
57. Go to a dog park with our own dog
58. Get drunk in Ireland (my caveat was that they have to be legal drinking age in Ireland!)
59. Go to Berlin
60. Go to Pompeii
61. Go to the Vatican (and, preferably, see the Shroud of Turin)
62. Drive on the Autobahn
63. See the Grand Canyon (Emilia says via donkey)
64. Ride the ducks
65. Visit a brewery
66. Make a huge ball pit for the littles using a kiddie pool
67. Have a family hot dog eating contest
68. Set a guiness world record
69. Have everyone pick a movie they hate and then we all watch those movies
70. Make the biggest cookie we can make
71. Find good vegan ice cream
72. Make maple sugar candy
73. Swap all of the meals in a given day so we eat normal breakfast foods for dinner, lunch for breakfast, dinner for lunch or whatever
74. Go on the Seattle underground tour
75. Audition for something
76. Visit a farm
77. Fill a pool with Jello and jump in
78. Go horseback riding
79. Protest something
80. Visit a jail
81. Go rollerblading
82. Go to Rome
83. Participate in a battle re-enactment
84. Eat pasta in Italy
85. See a komodo dragon
86. Stalk a peacock
87. Go camping
88. Hold a big snake
89. Visit the Seattle Art Museum
90. Ride a big rollercoaster
91. Get a family picture taken with a Disney character at one of the Disney parks
92. Write a book
93. Eat pizza in Italy
94. Go to NYC
95. Visit Yellowstone
96. Go to the Lincoln Memorial
97. See the White House
98. Go to Pearl Harbor
99. See the new World Trade Center building
100. See the Sears Tower

Meet Milo! He's a 9 week old papillon/King Charles mix. So far, he's the perfect puppy. He's energetic and playful and inquisitive and sleeps in his crate at night and hasn't had a single accident. Granted, that may be because someone takes him out literally every 20 minutes (but he only pees or poops about every 3-4 hours... the kids are just a little excited). Oh, he did pee on Emilia's BFF, but he was just excited, so that doesn't count. It was, however, pretty damn funny!

And, yes, that IS Milo in a Starbucks. Because we live in Seattle. And that's how Seattle rolls.

Week #5 Jared's Weekly Blog Post

2012-02-03T17:06:00.000-08:00

For the 5th week of homeschooling I'd decided to start learning about the operating system called Ubuntu, which is an operating system based on the GNU/Linux kernel. (Although the GNU kernel does not publicly support this variant, because it allows you to install non-free software.) it's also one of the most popular variants. I also, had decided to compare it with windows 7 using some tests some of which were on ; speed, boot, and etc. I also, had to run 1.5 miles, which I forgot to do so I have to do 4.0 miles this week instead.
I also, had too read 2 books one about Windows 7 and 1 about Ubuntu. I found the books to be quite interesting, since they made great points on each of the Os's. Anyways, I'm writing this as The Lion King is playing in the background and awaiting pizza to eat so as you might imagine it's hard to write. But, who cares?
Ok, so the last things I did for the 5th week of homeschooling I'd wrote a summary of the bill I chose (Be sure to check it out :) .) That concluded my 5th week! Thanks for reading this!

Truth and Limits

2012-02-03T12:25:00.000-08:00

I've written here before (probably ad nauseum) about the notion of accepting reality. I've always fully believed that, no matter how bad the truth is, it's still better to know it. It's only through knowing, and accepting, reality that I have been able to find my own ways to survive through hard times. Denial might work for awhile, but it has never gotten me anywhere good in the end.

There is a difference, though, between this idea of accepting reality and coming to understand that, sometimes, it is best not to keep pushing forward in the quest for more information, more knowledge, and more truth. Sometimes, we all need some time to simply be, I suppose, and to let ourselves catch up with what we've learned before moving on. From an emotional standpoint, there can definitely be too much of a good thing; particularly if the "good" is really only attaining knowledge of something terrible.

This is all a bunch of abstract mumbo-jumbo, but it's near and dear to my heart in a couple of ways. The first one was my relationship with Robert. There are many things that could be said about that, but I'll suffice it to say here that I had absolutely no idea who he was, or what his demons were, and I probably never will. I have witnessed so many instances of terrible behavior that he has inflicted on me and my loved ones that I no longer have any contact with him outside of attorneys, exchanges of the babies in public places, and an online (private) group that we use to communicate about the babies. Living with him was the most confusing, terrifying, and difficult experience of my life and, for a long time, I kept looking inward to find my fault in the situation (and, god knows, no one is perfect, and there is always fault to find). I blamed myself, and looked for my own culpability endlessly, and I trusted everything that he said and nothing about myself. I think that I was so terrified that I was right about him, that it was safer to believe anything but the truth. If it hadn't been for a couple of people who recognized the abuse in my situation, and who kept telling me (carefully, and with great sensitivity) of their own concerns and experiences, I might never have had the courage to believe in myself, and admit the truth. I owe those people my life, plain and simple.

This pattern of self-blame in the face of fear is not a new one for me, although it's newly-recognized on my part. There are many reasons for that, and you'll have to read the book that I am going to write if you want to know them (ha!), but it's funny how much I hate being right. Robert used to tell me that I always had to be right, and nothing is further from the truth. I HATE being right because, so often, I am the one who is right about some awful, big picture problem. I don't know why it seems to be my lot in life to put together terrible puzzle pieces, but it does. I derive no satisfaction from being right, most of the time. I'd far rather be a liar, crazy, selfish, a bad mother, neglectful, or any of the other things that Robert has accused me of. If I were, I'd seek out help and get better. Hell, I take Zoloft every single day just in case he WAS right about me having an anxiety issue! God knows I had a few episodes of anxiety and I was pretty darn miserable when we were married. I have no shame about taking meds. I don't even have any shame about being anxious or miserable. It is what it is, right?

At any rate, as I've progressed down the path of getting my health and the health of my children figured out, it's required an awful lot of faith in myself. And, frankly, it's often faith that I am holding onto by a thread. There is a part of me who wants someone to tell me that I am wrong. There is a part of me who wishes that I could point to something in my chart or theirs and say "Look! You crazy lady! You're all fine!" But, no matter how many times my mind tries to do that, it can't. Because it's not true. And, no matter how much you try to convince yourself of something, or just repeat something over and over again, it doesn't make it true.

This isn't to say that I'm always right in the specifics by a long shot. I'm not a doctor. And, I've found that I really do not need to be a doctor in the least. If you have good doctors, you don't have to tell them to be doctors. But, what you do have to do is be incredibly informed and aware of your own symptoms. And, as a mother, I need to know exactly what is going on in the minds and bodies of all seven of my children. My therapist asked me the other day if I had put together a family tree type of health chart, and I said that I'd been thinking about it, but it was in my head now. And, it is. I got all of the information that I need from my mom and was going to chart it out, but I don't need to because it's in my head in chart form.

I've always been different from other people. I was born with a variety of challenges that we will probably soon have a name for. But, while the name is useful for a medical treatment plan, it doesn't change the truth of the situation. Yesterday, I saw my endo and he got all excited about the idea that I might have Cushing's. He looked at me, all excited, and said "That is curable! It can cause weakness!" And, then, his face changed, and he said "But, it doesn't explain the family members..." and his voice trailed off. I just smiled and said "No, it doesn't. But, no matter what it is, or whether it is diagnosed, it is what it is." Because he and I both know the implications of the diagnostic path that we're going down. He doesn't have to tell me the medical side. I do not have to tell him the personal side.

It is what it is. Today, like yesterday, I am scheduling appointments and genetic testing and testing blood pressures and blood sugars and watching children with headaches, and limps, and purple circles under their eyes, and choking during meals, and slumping over while they sit, and just wanting to be held, and eyes drooping, and coughing. I am talking to them about their feelings, and their fears, and taking them to therapy, and laughing with them, and trying to maintain some sense of normalcy in the face of what might be a truly terrible truth. For today, that is enough. It's all that I know how to do. Today, Google can wait.