24 August 2016

Your brain is tricking you

Pre-anxiety attack
Puck struggles with anxiety in some similar ways that I do. Some of his anxieties work in different ways in his life.

Sometimes he struggles with contamination fears, especially surrounding food. If he gets food or anything he considers "dirty" on his hands, he is much more susceptible to an anxiety attack. He often has to leave the bathroom door ajar to pee. He doesn't like being in the bedroom on his own, especially when the sun starts to go down.

Some of his anxieties deal with sensory issues. For example, he had a panic attack before school one day because his shoe was "bothering him." He almost didn't make it to school that day.

So we've been trying to help him with his anxiety by giving him the tools to recognize and deal with triggers, and tools to recognize and get through anxiety attacks.

One thing we keep telling Puck is that his anxiety is his brain tricking him, and that's what causes his anxiety. It works remarkably well in order to appeal to his logical side.

There is nothing to "get you" in the bathroom. Your brain is trying to trick you.

And he's able to close the door almost halfway.

There's nothing on your shirt. Your brain is trying to trick you.

And he doesn't have to change into a different shirt.

It doesn't always work. But it works enough that we keep trying it.

One of the advantages Puck has is that his mama's brain tries to trick her a lot, too. So I can relate to him on that level, and sometimes I can talk to him in a way that he understands. Sometimes he sees that I really do understand how he feels because I've felt that way, too. I've been scared for no reason. I've had to change shirts for no reason. I've had moments where I'm upset and flustered and can't breathe, and I don't even know why.

My brain tricks me, too, sweet boy. I understand.

It's hard to have a high-needs child, especially when those needs are anxiety needs. There are so many times I see him anxious and there's nothing I can do to help, which breaks my heart.

But we're doing the best we can for him every day. So we remind him that his brain is tricking him, and we're here for him every step of his path.

22 August 2016

Observations from my apartment

Clara is an introvert, too. We get each other.
I spent the majority of my time in our apartment, usually in my office space.

Part of the reason for that is my anxiety. I hate driving, and I get anxious in groups of people, particularly in public settings. I get overwhelmed easily in crowds and feel like I have no escape. So it's "safer" for me to stay home as much as I can.

I go out for my appointments and the kids' appointments (and client meetings, of course). Other than that, I spend most of my time in the apartment.

There have been some consequences from my intense desire to stay in the apartment.

The most pressing consequence is that my vitamin D levels are very, very low. So low that my doctor prescribed vitamin D pills to help and instructed me to spend more time in the sun (which is the exact opposite of the instructions given to me by my dermatologist due to my rosacea....).

But there are good things that have come from staying in the apartment, too.

I get to people-watch. Because of where my office space is, I can see out the patio door (and the kids' bedroom window). So I see people walking back and forth every day, often with their puppies. I like seeing people going about their lives. Some of my favorite characters in the coffee house book have come from people-watching.

I should probably get out more. Be social a bit more.

But, for now, I can use the heat as an excuse to stay indoors. And we'll see how things go this fall.


18 August 2016

They're never too young to learn consent

Consent is a big deal.

Always.

And it goes both ways because men can be assaulted, as well. And women can assault women.

So one of the things that's really important for Bo and I is to teach the kids about consent. Both that they must receive it and give it for things to happen, like physical contact (hugs and kisses).

There are a few reasons we want them to know this, even as kids. First of all, we don't want the kids to feel obligated to give hugs and kisses to people (like family) so that if someone, whether family or not, tries to touch them inappropriately, they will know they are not obligated to consent.

My body, my choice.

Even with family.

Another reason we want the kids to know this is because they need to know and accept that "my body, my choice" extends to others, as well. Yes, Tink, it is your body and your choice. But it is also Puck's body and his choice whether or not he will accept hugs or kisses from you. And when they get older, they'll know that they must also make sure that the person they want to be intimate with or even hug or kiss more casually wants that contact.

My body, my choice.

With everyone.

Tink is an extrovert who loves hugs and kisses. So sometimes she gets so excited she forgets. At this age, we gently remind her, and usually she apologizes (to the person she had physical contact with) for not asking first. And those instances are getting fewer and further between.

Even at five and seven years old,

my body, my choice.

16 August 2016

The scribbling family

One of the reasons I wanted to meet Bo was because I knew she was a writer. I thought that, if nothing else, we could become writerly friends. I lucked out and ended up with an amazing wife instead.

But there has always been the writing.

Life has been chaotic in the last couple years, especially with the kids' health and my own health. So writing has taken a back seat a bit (outside of my work, at least). But now that things are finally settling down and we have a good routine, Bo and I are both working toward making more time for writing. We've set up a desk for her in the bedroom, and I've adjusted my daily schedule a bit to give her a few hours every afternoon during which she can write (or do whatever else she wants to do).

Sometimes you have to be
a superhero to write a story.
It's not only Bo and I that write stories. Puck is a writer, too.

In order to teach elements of stories (protagonist, antagonist, etc.), I had Puck fill out worksheets to develop characters and a plot, and then write a story. He loved it. He's written two stories (about dragons), And last week, he saw a toy gryphon and said, "I have an idea for my next story."

I think he's a scribbler, too.

I love that our family is full of writers. I love seeing the creativity when Puck and Bo are developing their ideas. I love sharing story ideas with them and talking about how to make them better.

Most of all, I love seeing the pride and joy on Puck's face when he reads us his latest story.

I'm so proud of him, and I can't wait to see what else he's going to come up with this school year.

In the meantime, Bo and I will be scribbling away, as well.

09 August 2016

I am her first and best advocate

Photo by Brandi Gilbertson
If you've been following this blog for a while, you probably already know about Tink's health concerns. They've been going on since her birth (well, before her birth, really), and sometimes I feel like we're going in circles trying to figure out what's causing these problems.

Right now, the most important issue we're dealing with is failure to thrive. We've ruled out any physical GI problem. Her blood work (almost) always comes back perfectly normal. So we're taking her care in a different direction: psychological.

Tink's pediatrician has referred her for behavioral therapy for a probable feeding disorder. We're optimistic that the treatment plan will help her, and we'll be able to get her healthy.

The problem is that my mama-sense is still tingling.

When Tink was still in infancy (a little over a year old) we took her to see a pediatric geneticist. While he didn't find anything at that time he could diagnose her with, he had a few conditions in mind that she could have, but was too young to meet the diagnostic criteria for. There were also a couple of conditions he was thinking about, but they would have required specialized genetic testing to diagnose, and he wasn't prepared to do that at that time.

As Tink has gotten older and (somewhat) bigger, the geneticist's report keeps echoing in my mind. I've done a little research (I know), and I can see signs of one of the conditions the geneticist mentioned all that time ago.

I'm reluctant to say, "I think Tink has this" to a pediatrician or other health care professional because I don't want to sound alarmist or that I'm looking for something more serious to be wrong with her. I don't want that at all. I want my daughter to be healthy. And the key to getting her healthy is finding out the cause of these problems.

As her mom, I know I am Tink's first and best advocate. I know what's normal and abnormal. I know if she's okay or not okay. And I have to follow my instincts when advocating for her.

I do think she might have one of the conditions the geneticist mentioned. But she might not. And I definitely think the more pressing concern is addressing her probable feeding disorder. Once that's out of the way, she'll either get better or we'll move on to the next round of diagnostic testing.

And I will always advocate for her as fiercely as I can.

08 August 2016

New changes, new structures

A typical day of homeschooling
Photo by Brandi Gilbertson
My life has changed a lot in the last four months or so.

We began homeschooling the kids, which changed our dynamic with Monty so that we have the kids every day when he's at work on his timesharing weeks.

I was diagnosed with fibromyalgia, so I'm trying to manage all the complexities that come with that.

Tink may have a feeding disorder (we're still figuring out her myriad of health problems).

And Puck has been referred to physical therapy which may help, but may point us in a different direction for his health needs.

In order to manage all these changes, it's been imperative for Bo and I to develop a clear daily structure and expectations for the kids as well as for ourselves. The structure is especially beneficial for Puck; he struggles with anxiety, so having a predictable routine every day helps keep him from becoming overwhelmed and anxious. It's also beneficial for Tink. She's very securely in the extroverted camp, and tends to get distracted easily. Our schedule keeps her focused until her schoolwork is done for the day.

It also helps me plan for work. One of the great benefits of my career is that it's built around flexibility. I work when I have to, but I can also work when I need to. This type of career allows me to go to the kids' appointments (and my own), homeschool, and spend lots of time with the munchkins. Having a set schedule with the kids gives me a framework for work. I know that Bo does homeschooling with the kids in the mornings, so I can use that time for work.

I like how our life is set up. I like knowing I can adjust my schedule for field trips to the science center or library or unexpected blood work. Not only am I working in my field, but I have a successful career (that's continuing to grow) and am doing what I need to do so I can be present for my family.

Yes, our life is full of chaos. But our structure makes it manageable. And I certainly do love my life.

05 August 2016

Happy Birthday, Puck!

Photo by Brandi Gilbertson
Tomorrow my sweet boy turns seven.

I can hardly believe it.

Puck has grown and changed so very much in the last seven years. We've had some challenges and successes, but overall he's healthy and happy and on his way toward becoming the person he wants to be.

Puck is smart. When you give him something to do, he'll pick it up quickly and effectively. He likes being a helper, and he likes knowing how to do interesting and useful things. Some of his favorite toys are puzzles and anything he has to build.

Since we've started homeschooling, he's excelled in math and science. He's passionate about science, too. He reads non-fiction books (particularly those about animals) nearly every day. He can recall facts about animals easily, and it has given as a way to nurture a love of learning in him. He's an excellent student.

Photo by Brandi Gilbertson
Now that he's securely in the "school-age child" portion of his life, other aspects of his personality are starting to emerge. He's funny, and has a very sarcastic sense of humor. He loves to trick people (playfully, of course), play pranks, and tell jokes.

Puck is clearly his own person. He does things his own way, even if it means he sometimes does things the hard way. Eventually, though, he figures things out on his own or asks someone for help to figure it out.

I am honored to be his mom and to get to be a part of his growing up.

I'm eager to see everything that's still to come in his childhood. I'm eager to see the teenager and young adult he grows into years down the road. And, for now, we'll celebrate seven.





Happy Birthday, Puck. Mama loves you.

Photo by Brandi Gilbertson

03 August 2016

The importance of simplicity

For the past several years, my life has been complex. From the divorce to moving back to Florida to the kids health concerns to everything else, life has been complex. But now that we've been getting things in line a bit more, including diagnoses for the kids, I'm trying to create a new normal in my life.

And that calls for simplicity.

Here's the thing. My life will always be complex, especially with fibromyalgia and having two high-needs kids, but if I can create as much simplicity as possible in the life I lead, it will help counter-balance the chaos of the things I have no control over.

My search for simplicity began with starting a bullet journal. I started my second notebook this month, and I love the system. It's working incredibly well for me. And it has simplified my life considerably since I keep everything (journal, lists, sticky notes, calendar) all in one convenient, fits-in-my-purse notebook.

The next step has been minimalization in the apartment through the Konmari method. Our apartment is cluttered with stuff we need and use, stuff we've acquired, stuff we don't want anymore.... and I'm making a concerted effort to get rid of anything that doesn't need to be here anymore. Once we de-clutter the apartment, we'll have more breathing and living space. Since I spend the vast majority of my time in the apartment, that will make me happy.

I know there will still be complications in my life. I know that simplicity and minimization won't solve our problems.

But I'm hoping that simplicity in some areas of my life will give me the emotional and mental energy to deal with the complications in other areas of my life. And since the complications I experience tend to be pretty significant, I need all the energy I can get.

01 August 2016

What does chronic illness look like?

Since being diagnosed with fibromyalgia, I've had to make some adjustments in my life. Some of these adjustments have been good, like getting medication so I'm not in pain all the time. Other adjustments have been more of a challenge.

The biggest challenge I've faced so far is adjusting how I see myself now that I'm labelled as someone with a chronic illness.

Fibromyalgia is a lifelong diagnosis. I will always have it, I will always combat pain and its other symptoms. And it may get worse as I get older.

Because of this illness, there are things I have to do differently in my life. For now (maybe not forever), I'm giving up the idea of being able to run a marathon. Or run at all, for that matter. My exercise has to be more gentle to my body.

I'm also adjusting my daily schedule to accommodate my fatigue. I'm becoming a polyphasic sleeper (not to take advantage of the benefits, but simply because that seems to be what's easiest for my body and work/family schedule).

Right now, I'm trying to find a balance between the diagnosis and the identity. Yes, I have fibromyalgia, but I am not fibromyalgia.

One of the ways I'm doing this is by reading Toni Bernhard's How to Be Sick. So far I like her approach to chronic illness.

There is illness here, but I am not ill.

This approach is allowing me to make accommodations for the illness without letting myself get pulled into a black hole of "I can't because fibromyalgia."

I am tired and I hurt. But I still work and I still care for my family and I still do the things I need to do in order to be the woman I want to be.

It's still a process. There are days I let the fibromyalgia keep me from doing what I need to do.

There are days it has to.

When those days happen, I do what I can and try again tomorrow.

I have fibromyalgia, but I am not fibromyalgia.

29 July 2016

I was supposed to go to the doctor today

I've been posting about health-related things lately. They've kind of been dominating my attention.

Like today.

For the first time in my life, I had to cancel something because of fibromyalgia pain. (Well, let me clarify. I had to cancel something beyond hanging out with friends/family.) I was supposed to go to my dermatologist's office this morning for a follow-up appointment. But because of my incredibly high pain levels, I had to cancel.

This is just one more example of how my life and my self is different because of chronic illness. I can't always go and do and be as easily as I once could.

I'm adapting. Trying.