Yes, I'm Still Sick

There's so much running through my brain right now that it's hard for me to put my thoughts into words but I'm going to try.

My grandfather went into the hospital on my anniversary - he was ill and very uncomfortable. Four days later he passed away. He died last Saturday, which coincided with the day Nazis decided to take over Charlottesville and were met with resistance.

I missed most of the action on the news because I was so focused on my ailing grandfather. I'm glad I did. Let me say it, again: I'm glad I missed the action. I was right where I needed to be.

In case you haven't figured it out, I'm Jewish. I come from a very long line of proud Jews and I'm the product of four Holocaust survivors.

I'm grateful my grandfather missed the insane action on Saturday.

He moved to this country with my grandmother and father after the Holocaust. He rebuilt his life, the community around him, and his family. He was one of those people who built a community…

As someone with a chronic illness, I know most of my limitations. If I do too much in the morning, I'm not doing anything after 2pm. If I do too much in the evening, I will feel like I had the best work out of my life, but in a painful way, the next morning.

Yet, I'm active. As active as I can be. I get tired easily, though.

Case-in-point: I had a rough day yesterday. The news about the death of a friend hit me really hard. I didn't want to parent - I wanted to be left alone to process my feelings. However, one kid needed to go to Occupational Therapy and I had to drag the other along with him. It was exhausting. I had to rest when I got home before meeting some family for dinner.

That doesn't sound like stuff that should be exhausting but it is.

A post on The Mighty got me thinking. There's so much stuff we share within our community of similar people that we don't share online for various fears. Those fears are anything from judgement that we look tired to j…

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 after…

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…

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…

Sometimes life hands you lemons and you can make lemonade. Sometimes life hands you lemons and you cry because your head hurts so much that you don't know what to do with those lemons.

I'm the latter over the last few weeks.

I still have some good days where I feel AMAZING and then I have some really awful days, like today, where I wonder what I was thinking coming into work when I feel so awful.

But I like to show my coworkers that I'm strong enough to be here.

Last week, I was not. I went to bed with a migraine and woke up with what felt like a tornado swirling in my head. The meds I took before I went to bed didn't work. But I still tried to go to work...until I got sick on the side of the road and went back home.

Migraines like this are horrific. It's the only way I can describe it. I've come to understand that some people, who may only get migraines occasionally, need to rest because their heads hurt in such a way that movement makes them ill. I'm rar…

This morning, my friend Sarah asked "what are you grateful for?" My answer:
"My current healthcare where I cannot get kicked off my insurance because my body fails me. I'm having a bad flare up that came out of no where and it's making me think back to when I wasn't allowed affordable health insurance - even through an employer."

You see, there was a time not too long ago when I was denied health insurance.

Let's backtrack: I was 22 when I was diagnosed with interstitial cystitis (IC). Like dysautonomia, there were doctors who didn't believe IC was a real disorder or disease. At the time I was getting tested until the time I was diagnosed, I had insurance. By the time I had a diagnosis, my insurance told me this was a pre-existing condition that I didn't disclose and I was kicked off my insurance. None of my bills were paid.

I was 22. I didn't know how to navigate the red tape and the bureaucratic system. I felt so lost. How could I get k…