Don't Sugar Coat Things

I have two little boys and they are growing up quickly. Over the last year or so, they started to realize that their mom isn't like all the other moms. They started realizing that their mom is sick. They notice when I need to rest. They can see when I have a migraine. They can also tell when I can't handle their shit anymore because my body feels broken and I can't focus on two things at once. They know. They know I'm not at my healthiest. They also know when I have good days. I'm fairly certain they can see when I suck it up so we can go to cool and fun stuff as a family.

I suck it up, a lot. I do. I try really hard to. Mostly because I want them to have a fun childhood. My mom was amazing but when she was ill - especially when I was younger - she didn't suck it up. We missed a lot of things because she wasn't feeling well. Much of my 12th year of life was taking care of her when she got home from work. I'd make dinner, and she'd go to sleep afterward. It sucked. I ate a lot of bacon that year.

Mmmmm...bacon....

Anyway, I never sugar coat things. I wear my emotions on my sleeve and you can see when I feel crappy. But, for my kids, I show up. I will take as much medicine as my body can handle to just show up. And I won't sugar coat things for them or anyone. It's not in my nature and it's a handy skill that I refined in Israel.

But I deflect a lot of my life with humor. I always have. Sometimes it's a problem - like when I'm in the ER and I feel awful but I'm cracking jokes. I'm a lot like my dad. I do it because I want people to see me as human and not as the sick patient. I don't like people feeling sorry for me - even my kids. I want them to feel empowered enough to help someone like me.

So, I don't sugar coat things - I can't.

Someone told me to shield my kids and my office from my illness. HOW?!?! How do you do that? I show up to work when I feel gross - so how do I NOT explain to people that I'm not feeling great but I'm still there?!? How do I not explain to people that I've had a migraine for four days and it's exhausting - so I'm working remotely?!? AND - how do I NOT explain to my kids that I need to rest for a few minutes before I play an intense game of "mom build these legos for me"?!

I just can't do that. The reality is that I'm one tough broad - I am. I can handle a lot and I want my kids to handle things like me. And I don't want them to sugar coat anything.

Being a Woman Sucks...Sometimes

I'm not gonna lie - this week is rough. After feeling relatively OK during the early part of the week, I was blindsided yesterday with a migraine and hormones.

Holy hormones, Batman!

Let me back-up. I'm off my birth control because, as I mentioned a while back, we're trying to conceive kid #3. While on birth control, my menstrual cycle was normal, and my dysautonomia symptoms were in check. I knew to take iron pills when Aunt Flo (AF) showed up heavily and I knew to drink a boatload of Gatorade for a week (as opposed to the one or two glasses I need of it, daily).

Birth control also kept my chronic nausea in check because it balanced out my hormones. When I asked my OB/GYN about going off of birth control, she asked "are you sure you want to do this?" I was sure because we want another child.

Sometimes I regret that decision. Right now is one of those times.

On top of the major shifts in hormones, I told you guys about my chronic migraines. Well, with a shift in hormones, those bad boys come back in full force. I found a supplement that contains feverfew and another few that contain magnesium, CoQ10, and lots of B vitamins. I take them religiously and they brought my migraines down from daily to once or twice a week. When we decided to conceive kid #3, I had to go off of my migraine prevention medication, too.

Are we having fun yet? I'd like to get off this ride. Not the baby-making ride but the one that leads my body into a tailspin.

I went to bed last night feeling unbelievably ill and questioning whether I'd be able to eat today. I woke up knowing I had to be in the office today but feeling so run down and very crampy in all parts of my body - especially my intestinal area.

So, after taking a quick poll of some fellow dysautonomia divas, here's what I learned about having dysautonomia when AF pays a visit:

• We bleed heavily and have to take iron supplements to compensate for the loss of iron
• It's painful - not just for a day or two before but we can feel it coming on in the worst way 
• Taking two advil or tylenol won't cut it - some of us are on some heavy duty pain killers for a week
• The hormone fluctuation makes our already-annoying symptoms much worse
• You need to up your fluid intake more than you normally do
• Fatigue that rivals that of your first trimester of being pregnant
• We just expect our bodies to be non-compliant for about a week or so

These are simple terms - the reality is much worse and why being a woman really sucks sometimes. Last night's bout of intestinal cramping felt like there was a gremlin in my stomach squeezing my intestines really hard. And it felt like any food I ate in the beginning of the day was still sitting in my stomach. For other women, the cramps are so unbearable that it sends their entire body into a tailspin, sometimes leading them to multi-day hospital stays (none of us enjoy going to the hospital).

Needless to say, I'm exhausted, in pain, and my head still hurts. 

Sensory Processing Disorder

You guys....we had the most amazing weekend. Truly. We spent lots of time outside and I didn't pass out or get sick once. I mean, I DID need to go to bed at 7 or 8pm twice but I felt pretty good through this great Independence weekend. Ya know...minus the scalding sun burn I have now...which is what I get for sitting outside for so long.

One of the other things we did besides sit out side was create a calm-down-corner/reading nook for our oldest son.

Yo has SPD (sensory processing disorder) and expressive/receptive language impairment. You're probably thinking one of two things:
1) What the hell is that?
2) Doesn't EVERY kid have something nowadays?

So, let me answer #2 first - no. Not every kid has something. If you met my oldest, you would think he's a perfectly "normal" kid...until you spend some time with him. Then you start to see his little quirks. A therapist last year told us he seemed fine and would grow out of his quirky behavior. In the course of a year, we learned that's not entirely true and these aren't really quirks.

Which brings me to answer #1: According to WebMD - Sensory processing disorder is a condition in which the brain has trouble receiving and responding to information that comes in through the senses. ... Some people with sensory processing disorder are oversensitive to things in their environment. Common sounds may be painful or overwhelming. 

Imagine you're at a rock concert and you REALLY love the song playing but your bff wants to tell you this story about someone. You want to listen to them both but it's physically impossible. So you tune out your friend or the song. You may hear background noise but that's all it is. For kids with SPD, life is like being at that rock concert.

Essentially, what was explained to us is that Yo's nervous system never formed properly so the connections between his nerves and the brain - and the subsequent receptors - were never created to some extent. So, he had some developmental delays and some speech issues. Kids with SPD generally have some problems paying attention, going to the bathroom (unlike most kids their age), and multi-tasking. So, with Yo, if he's coloring at school, he's doing it to calm the chaos and tune everything that's overwhelming out. Sounds like a great coping mechanism, right? Wrong. When he's so immersed in something, he's missing the body's other connections like the sensation to go to the bathroom. And if you try to take away his coloring or tell him he cannot do something, he has a meltdown. Not a tantrum, a meltdown.

Kids with SPD often need sensory breaks which is kind of like a chance to recharge after sedentary activities. Adults will go on coffee breaks, kids have a spectrum of activities that range from "heavy lifting" (pushing a broom) to sitting in a tightly wound swing that makes them feel safe.

So, getting back to this calm-down-corner we built...it's essentially a closely-confined space where Yo can read or calm down when he's feeling overwhelmed. We have a surgical scrubbing brush we use to stimulate Yo - sometimes it's calming and sometimes he gets him completely wired up. When we get him wired up, the idea is to have him sit in his reading nook to chill out. Other ideas from his occupational therapist where yoga moves that don't include going upside down (it's overly stimulating) and listening to music at a low volume while in his reading nook.

In a nutshell, that's what we've been dealing with. I'm sure we'll revisit this topic soon...